Pasireotide

[Diane]

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

[Diane Smith]

http://www.pkdiet.com/pld_pasireotide.php

Sent from my iPhone 4s

Diane

On Feb 12, 2013, at 11:02 PM, hanna...@gmail.com wrote:

I'd be interested in learning more about it.

Is there a link I could read about it?

Would Mayo cover the cost of monthly visits?

Nancy

On Tuesday, February 12, 2013 8:33:07 PM UTC-6, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

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[Diane Smith]

I have emailed you privately

Sent from my iPhone 4s
Diane

[barbara rosenblatt]

I am planning on participating in the clinical trial.  I am flying to Rochester Tues March 26 and will be there until late afternoon of the 28th.  I am excited and a bit nervous.  Let me know if anyone else will be there then, as I would love to meet fellow PLD ers.  Any advice or suggestions are welcomed.

Barbara Bsr3

On Feb 12, 2013, at 9:33 PM, Diane <smith...@mac.com> wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

[Tonya Rasmussen]

Barb, I will be there next Tuesday, Wednesday and Thursday. Sorry a week sooner. Which clinical trial are you going on? Thanks, Tonya --- On Tue, 3/12/13, barbara rosenblatt <rosenblat...@gmail.com> wrote:

[Diane]

Dear Barbara,

I think Peggy might be coming over for the pasireotide trial. Good luck with this trial. I really want to participate in the pasireotide trial, but the doctors tell me to continue with Sandostatin LAR for another year. They are going to measure my liver and kidneys from my last visit and will let me know if I continue to shrink. I am hopeful. 

Barbara you are doing such a wonderful thing to participate in this trial. Let us know how it goes. For the first year of octreotide I was on placebo. It was great to get checked by the experts! I really enjoy the Mayo Rochester.

Warmly,
Diane

[barbara rosenblatt]

tonya,

sorry I'll miss you. I am doing the pasireotide trial.  Is that what you are doing there?

Barbara. 

[diane]

http://www.naturalnews.com/039472_antibiotics_organic_fruits_petition.html

There are antibiotics in your organic apples and pears

Wednesday, March 13, 2013 by: Jonathan Benson, staff writer

Organic apples and pears grown in the U.S. for the European Union (EU) market are already effectively grown without the use of either streptomycin and tetracycline -- EU provisions do not allow the use of any antibiotics in agriculture -- which means there is no valid reason why these same fruits cannot be grown without the two antibiotics for the American market as well.

(NaturalNews) You may not be aware of it, but every time you bite into that crisp, organic apple or succulent, organic pear, you could be exposing yourself to two different antibiotic drugs that the U.S. Department of Agriculture (USDA)'s National Organic Standards Board (NOSB) has quietly allowed to be used on these two fruits since the organic program's inception back in the 1990s. And unless the health-conscious community makes its collective voice heard on this important issue, the deceptive practice will continue to play a role in the growing antibiotic-resistance epidemic that is sweeping modern society.

It has been a problem since the early days of the National Organic Program (NOP) -- a destructive bacterial disease known as fire blight tends to harm many apple and pear varieties, making their trees appear as though they have been burned by fire. If left to run its natural course without effective intervention, fire blight can kill blossoms, shoots, limbs, and sometimes entire trees, making it difficult to effectively grow certain fruits for commercial distribution.

- - -

http://www.sustainablebusiness.com/index.cfm/go/news.display/id/24669

03/15/2013 04:05 PM

Organic Apples, Pears Sprayed With Antibiotics

Having been a devoted buyer of organic products for decades, I was shocked to learn today that antibiotics are allowed to be used on certain organic foods.

Surprisingly, those foods are apples and pears.

All other uses of antibiotics on organic foods have been outlawed since organic certification became a federally regulated program in 2002.

However, organic apple and pear growers are still allowed to spray streptomycin and tetracycline - the same antibiotics used to treat human and animal infections - on their trees to prevent the spread of a costly disease called fire blight, which stifles new growth and can kill trees.

In 2011, the National Organic Standards Board (NOSB) informed organic apple and pear growers that antibiotics would no longer be allowed after October 21, 2014. 

[Barb Seidman]

Diane, did you read the comment at the end of the article? It's not as gloom and doom.
Barb

[diane]

I thought if the European Union asked the USA to stop spraying antibiotics on apples and pears and organic growers shipping to Europe have managed to do this; then perhaps we can have a similar experience? For now it will be law by 2014 maybe. If the big commercial growers win this might be delayed until 2018 or longer.

~Diane

[barbara rosenblatt]

I am at the Mayo.  Got my injection a few hours ago.  Yipee.  SO far, so good.

They said that they will be getting some funding to help with transportation costs.  I am the 4th person to start, so they need more people.

Barbara Bsr3

On Feb 13, 2013, at 12:02 AM, hanna...@gmail.com wrote:

I'd be interested in learning more about it.

Is there a link I could read about it?

Would Mayo cover the cost of monthly visits?

Nancy

On Tuesday, February 12, 2013 8:33:07 PM UTC-6, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

[Max Gordon]

Congratulations Barbara! 

Diane, are you in the pasireotide trial? Dr Hogan had told me a year ago when I finished the Octreotide trial that we, former trial members, were not eligible for the new trial. Has this changed?
Thanks,

Rosemarie
Sent from my iPad

[Diane Smith]

Rosemarie, are you currently taking monthly injections of octreotide?

Sent from my iPhone 5

~Diane

[Diane Smith]

Congratulations Barbara. Let us know how this works for you. I am a tiny bit jealous. I was told pasireotide was stronger than sandostatin LAR. 

I am currently on my 5th year of sandostatin. 

Sent from my iPhone 5

~Diane

On Mar 27, 2013, at 10:18 AM, Max Gordon <mgord...@aol.com> wrote:

[Diane Smith]

No I am not on pasireotide. And yes the eligibility may have changed

Sent from my iPhone 5
~Diane


On Mar 27, 2013, at 10:18 AM, Max Gordon <mgord...@aol.com> wrote:

[Max Gordon]

Yes

Sent from my iPad

[Diane Smith]

That's the difficulty.  We have to be off octreotide for 6 months.

Sent from my iPhone 5

~Diane

[Barb Seidman]

How great! Let us know how things go.
Barb

[diane]

Hello Nancy,

Try contacting Dr. Hogan directly to see what she says.

~Diane

[diane]

I am so sorry. I released some spam mail to our group. Please delete and excuse me.

~Diane

[diane]

I am here to give you every encouragement. If you can tolerate pasireotide the drug is well worth it! For the first year I was on placebo, yet I felt I lost weight. This is probably from the researchers seeing me so frequently that I adhered to my diet very strongly and I had the assurance that someone was there to help me out should I experience any difficulties. I cannot say enough good things about the Mayo researchers.

There was a month or two when I was considering quitting, but my overall health improved considerably. Once I was taking octreotide (i have been on it for 5 years now) I have seen actual real liver size shrinkage each and every year. The Mayo is one center that has the ability to document shrinkage, to measure the size of our liver; and to really follow our health through blood testing and various studies and examinations.

I want to be a part of the pasireotide clinical trials but I have been told to stick with octreotide, so I am going to do it.

Good luck with pasireotide. I hope you have favorable results. Please report any affects any changes in how you are feeling to the Mayo.

Warmly,
Diane

On May 7, 2013, at 8:35 AM, in...@bendfamilydentistry.com wrote:

I am sitting here after my first injection at the Mayo Clinic. So far so good. The reimbursement is very poor, especially coming from the west coast. Big commitment. Especially not knowing if you are on a placebo or not. I'm sure it will be worth it.

[Kelly S.]

Is this still recruiting? I would be interested in this trial. I have taken octreotide in the past, but it has been about a year since my last dose.

 

Kelly

[diane]

Kelly yes they are still recruiting. Would you like Dr. Hogan's phone number?

~Diane

[diane]

Dear Vanessa

So great you were able to meet with both Dr. Torres and Dr. Hogan. If Dr. Torres says you are not a candidate then it is likely to be true but Dr. Nagorney would have the last word as he is the surgeon. There needs to be one blood vessel that supplies the liver with blood left once they perform a resection. If this were me, I would call and ask Dr. Nagorney to please take another look at my imaging studies to see if I am at least remotely a candidate for a liver resection. In my opinion the one two punch comes from first having a liver resection followed by octreotide. The trouble with octreotide or pasireotide is not everyone can tolerate the side effects.

LIVER RESECTION

Your age is similar to Meg's when she received a liver resection at the Mayo. You can read her story

http://www.pkdiet.com/stories.php

Click on MORE

and choose MEG

OCTREOTIDE

See side effects octreotide:

http://www.pkdiet.com/pld_octreotidesideffects.php

If you will go to:

http://www.pkdiet.com/pld.php

Then to the right is a button MORE

Click the MORE button

Click RESEARCH

and read at your leisure about octreotide.

I had bluecross/blueshield.

If your local doctor agrees to give it to you, then he can bill it as major medical.

Major Medical code

J2353

Administrative Code

96372

Diagnosis codes

585.3

573.8

As a major medical, this depends on your stop pay with your own insurance. Mine was set at $2500 dollars including deductible. From then on Bluecross/blueshield would pay 100% but until then I had to pay $500 per month until my stop pay was met.

Then I applied directly to Novartis' Patient Assistance Program. It took me a long time but finally I received an exception for one year. My one year is up in July when I will have to start the entire process over again.

PASIREOTIDE

I have heard that pasireotide is much stronger than octreotide.

Should you have more questions, just write.

~Diane

On May 11, 2013, at 11:50 AM, vanessa...@yahoo.com wrote:

Hello Diane! I am a 35 years old stay at home mother of two. I discovered 5 years ago (while pregnant with my 2nd child) that I had PLD. It runs in my family, (father, grandmother, aunt). I was told that I should not worry and that allot of people have it and don't even notice. I wish I had been less trusting and did more research 5 years ago before my liver really started to grow. I took birth control for 15 years, and had four pregnancies 2 live births. I was on fertility drugs and progesterone to avoid another miscarriage. A few years ago I noticed my normally flat stomach begin to grow. I thought I was just getting fat,  and started working out everyday and barley eating. Finally when I had a 6 pack but was still being asked how far along pregnant I was, I insisted my doctor take another look. Also  other problems (back pain, shortness of breath ect..) Sure enough my liver has grown so large that it takes up my entire abdomen. I had an endoscopy and my liver is pushing my stomach up, causing all the indigestion, discomfort and bloating. My local liver Dr. told me I had no choice but to get a liver transplant and to register on the waiting list. Thanks to your story and advise I decided to fly to Mayo clinic in MN to see Dr. Torres last Wednesday. Such a wonderful man, spent two hours with me and my mother. He diagnosed my PLD as Severe... Unfortunately he does not think I am a good case for liver resection (surgeon was on vacation and will look at my file on Monday) but he does want me to either join the clinical trial or start Octreotide ASAP. Dr. Hogan came in and spent another hour with me explaining the clinical trial and writing a letter on my behalf for the insurance company to get them to pay for the Octreotide. I was hoping you could give me a few tips on getting my insurance to pay for this drug if they deny my claim. If not I will have no choice but to fly from California to MN every 28 day to start the new clinical trial. That would be my last choice since I have two small children and my husband works long hours. I appreciate any tips you may have for me. I also have slowly modified my diet per your advise for the past year. 

On Tuesday, February 12, 2013 6:33:07 PM UTC-8, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

[Marianne]

Hi

My daughter is 22 and on he pill- my doctor advised not to have her tested as it might effect her insurance- but I'm worried as her if she has PLD its probably growing now . Should she be tested in your opinion  Diane ? 

Marianne

MB: 07703298550

www.varca.com 

Sent from my iPad

[diane]

The reason it affects insurance is if she wants life insurance. Health insurance should not be a problem. Many years ago insurance upped my rates following a liver resection. I do not think they are allowed to do this anymore.

I have heard that there are some places located in shopping malls that will do an MRI to see if your daughter has liver cysts. I have been told they do not let insurance companies know about this.

Does your daughter have an alternative to hormones for birth control?

If she is willing and if this were my daughter, I would have her tested.

Warmly,
Diane

[mde...@aol.com]

I know PKD is different to PLD in some areas but on www.kidney.org.uk there is a factsheet which discusses the subject of testing. The days of insurance in the UK being affected by testing is gone. There is only a small effect. Insurers cannot discriminate but can only weight premiums in a limited fashion due to the risk under UK law. I should know as I am a pkd/pld sufferer (amongst others) with degrees in financial services, law and a postgraduate diploma in law. My brother's life assurance was only weighted £5 per month if my memory serves me right and he has both conditions also.

 

Dont forget Diane is in the US so the position there may be considerably different.

 

Mark

[mde...@aol.com]

You are lucky. Here in the UK we dont get a look in for this or octreotide.

 

Mark

[Marianne]

Hi Diane 

I think she should be tested. Never heard of MRI scanners in Malls in UK.

THANKS 

Marianne

MB: 07703298550

www.varca.com 

Sent from my iPad

[Junk Mail]

My 3 children also have pkd and I'm ensuring my daughter stays away from the pill when she's at that point just in case she develops pld 

Sent from my iPhone

[diane]

Mark does this mean in the UK you are not followed monthly by a doctor while taking octreotide? 

There are many tests that need to be performed early:

electrolytes

blood sugar

thyroid tests

gallbladder tests

bleeding tendencies

any many more.

Even my local doc who I rarely see (just see his nurse for injections) has grown to understand octreotide symptoms and takes any symptoms I report or experience very seriously.

Warmly,
Diane

[diane]

Perhaps it is only in the USA?

I hold out the hope you daughter's tests show no PLD.

Warmly,
Diane

[diane]

This is great that your daughter stays away from the pill.

My own personal belief is that all should stay away from hormones; just my own non-medical opinion. 

 I myself did take the pill for many many years from when it first came out until the age of 29, about 12 years. Then I switched to a device called the copper 7 because my doctor believed that I had taken the pill for too long. 

Warmly,
Diane

[Phyllis]

Hi Diane,

When I was taking to Octreotide injections monthly I had none of these tests done pre and in the 18 months I was on it saw the doctor every six months and had no further bloodwork done.  No wonder I wanted to stop taking it—I felt I had no medical support at all.  (Canada).

Phyl

[diane]

I am oh so grateful for the support I have had and still continue to have while taking octreotide. I am so sorry your experience was so difficult.

When octreotide works, it really works. It just depends on us and our doctor's to decide when to stop octreotide or to continue taking it.

Very few doctors know of the side effects caused by octreotide or the tests needed to follow a person taking octreotide.

Each year I have my 

thyroid examined

liver palpated

MRI of liver and kidneys and measurements taken

Every quarter I get

blood sugar test

bleeding test

electrolytes

I don't have a gallbladder

There are a few other tests I get, but I cannot remember them all right now. Let me see if this is on Novartis website.

FROM NOVARTIS on OCTREOTIDE:

http://www.us.sandostatin.com/health-care-professional/index.jsp

Warnings and Precautions:

• Gallbladder abnormalities may occur: Patients should be monitored periodically.
• Glucose Metabolism: Hypoglycemia or hyperglycemia may occur. Blood glucose levels should be monitored when Sandostatin LAR Depot treatment is initiated or when the dose is altered. Antidiabetic treatment should be adjusted accordingly.
• Thyroid Function: Hypothyroidism may occur. Baseline and periodic assessment of thyroid function (TSH, total and/or free T4) is recommended.
• Cardiac Function: Bradycardia, arrhythmia, conduction abnormalities, and other EKG changes may occur. The relationship of these events to octreotide acetate is not established because many of these patients have underlying cardiac disease. Use with caution in at-risk patients.
• Nutrition: Octreotide may alter absorption of dietary fats. Monitoring of vitamin B₁₂levels is recommended during therapy with Sandostatin LAR Depot. Patients on total parenteral nutrition (TPN) and octreotide should have periodic monitoring of zinc levels.

Drug Interactions: The following drugs require monitoring and possible dose adjustment when used with Sandostatin LAR Depot: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, bromocriptine. Octreotide has been associated with alterations in nutrient absorption, so it may have an effect on absorption of orally administered drugs. Drugs mainly metabolized by CYP3A4 and which have a low therapeutic index should be used with caution.

Adverse Reactions: The most common adverse reactions occurring in patients receiving Sandostatin LAR Depot are:

• Acromegaly: 
• biliary abnormalities (52%)
• diarrhea (36-48%)
• cholelithiasis (13-38%)
• abdominal pain or discomfort (11-29%)
• flatulence (26%)
• influenza-like symptoms (20%)
• constipation (19%)
• headache (15%)
•  anemia (15%)
• hyperglycemia (15%)
•  injection site pain (2-14%)
• hypertension (13%)
• dizziness (12%)
• fatigue (11%)
•  nausea (10%)
•  vomiting (7%)
• hypothyroidism (2%)
• hypoglycemia (2%)
• goiter (2%).
• Carcinoid Tumors and VIPomas
• biliary abnormalities (62%)
• injection site pain (20-50%)
• nausea (24-41%)
•  abdominal pain (10-35%)
• fatigue (8-32%)
•  headache (16-30%)
• hyperglycemia (27%)
•  back pain (8-27%)
• constipation or vomiting (15-21%)
• dizziness (18-20%)
• sinus bradycardia (19%)
•  pruritus (18%)
• URTI (10-18%)
• myalgia (4-18%)
• flatulence (9-16%)
• arthropathy (8-15%)
• rash (15%)
•  generalized pain (4-15%)
• sinusitis (5-12%)
• conduction abnormalities (9%)
• hypoglycemia (4%),
• arrhythmia (3%).

References

1. Sandostatin^® LAR Depot [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals Corporation; 2010.
2. Data on file. Novartis Pharmaceuticals Corporation.
3. PubMed [database online]. National Center for Biotechnology Information. Available at: http://www.ncbi.nlm.nih.gov/sites/gquery?term=sandostatin. Accessed March 19, 2009.

How much does Sandostatin^® LAR Depot cost?

How much the drug will cost depends on the local pharmacy where it is dispensed and what your individual insurance plan may cover. This amount can vary. If you have insurance questions about Sandostatin^® LAR Depot, call 1-877-LAR-HELP (1-877-527-4357) to be connected to a reimbursement specialist. He or she will help you find out more about your health plan's coverage for Sandostatin^® LAR Depot and whether you would be eligible for other kinds of assistance.

Is patient assistance available?

Novartis Pharmaceuticals Corporation is committed to providing access to our medications for those most in need through the Novartis Patient Assistance Fund Inc. (PAF). PAF provides assistance to patients experiencing financial hardship who have no third party insurance coverage for their medicines. For more information, visitwww.patientassistancenow.com.

[Barb Seidman]

Marianne, since both the PLD and the insurance issues seem to have you concerned, why don't you suggest that your daughter use another method of birth control and not be tested unless she has symptoms. But, remember, she is an adult, and this is her decision.
Barb

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[Barb Seidman]

Right, Mark. Here, it's only the health insurance that cannot be deny you. Life and disability insurance are different, but you can find decent rates if you search for them.
Batb

mde...@aol.com wrote:

I know PKD is different to PLD in some areas but on www.kidney.org.uk there is a factsheet which discusses the subject of testing. The days of insurance in the UK being affected by testing is gone. There is only a small effect. Insurers cannot discriminate but can only weight premiums in a limited fashion due to the risk under UK law. I should know as I am a pkd/pld sufferer (amongst others) with degrees in financial services, law and a postgraduate diploma in law. My brother's life assurance was only weighted £5 per month if my memory serves me right and he has both conditions also.

 

Dont forget Diane is in the US so the position there may be considerably different.

 

Mark

-----Original Message-----
From: Marianne <marian...@gmail.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>
Sent: Sun, 12 May 2013 19:21

[Barb Seidman]

How can tests be reliable if test subjects ate not followed? I'm curious.
Barb

Phyllis <phyl...@hotmail.com> wrote:

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[Phyllis]

I was not part of a test study—I was given the medication simply because I had 100% coverage for it.  My physician told me I was the only person in my city on the medication for PLD symptoms.  I felt terrible on the drug and had no confidence that I was being monitored appropriately.

[diane]

Phyllis it is too bad that you had this experience and the feeling of being without medical support while taking a PLD drug that is still in clinical trials can be very frightening. I think you made the best decision for yourself by stopping octreotide. For some octreotide works well. For others it is just not worth the risks.

I feel very lucky that my doctor knows me and has followed me for greater than 17 years. I would be lost if I did not have his/her medical support to fall back on.

lots of support to you, Phyllis.

Warmly,
Diane

[Barb Seidman]

What a lousy, rotten doctor.
Barb

[mde...@aol.com]

In the UK there are laws regulating their positioning as well as use.

 

Mark

I think she should be tested. Never heard of MRI scanners in Malls in UK.

-----Original Message-----

From: Marianne <marian...@gmail.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[mde...@aol.com]

What it means is that we get no drugs for PLD whatsoever. I was diagnosed in 2001 with both diseases and am yet to see a liver specialist of any sort.

 

A few liver related blood tests are done every month as part of dialysis monitoring and thats all.

[diane]

The UK seems well ahead of the USA on many issues.

~Diane

[diane]

Mark what about prilosec or nexium? See

http://www.pkdiet.com/pld_protonpump.php

Its not octreotide, but one could have a two fold effect if one experiences GERD.

~Diane

[mde...@aol.com]

There are some occaisions when hormones are prescribed which are essential to life eg in transplant situations and Addinson's Disease sufferers. My mother has hormones for Addinsons and had a transplant previously.

 

Mark 

-----Original Message-----
From: diane <pld...@me.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[mde...@aol.com]

I get absolutely nothing for PLD.

[Barb Seidman]

Mark' you might not get more liver function tests because PLD does not impact liver function.
Barb

[diane]

PLD does not usually affect liver functioning.

~Diane

[diane]

This can become a trade off. It is clear that certain hormones are needed to treat deficiency but hormones can affect other organs. I think this question remains in the realm of our physicians and ourselves to choose or not to choose to take medications.

So sorry your Mom has Addison's. She really suffers with PKD.

Warmly,
Diane

[diane]

Of course, it is my pleasure. Let us know what Dr. Nagorney says. 

When I was to have a second surgery (didn't need it when the time came for it), Dr. Torres told me that Dr. Nagorney would not do a second surgery in my case. I had scheduled myself for two weeks at the Mayo because I wanted my docs to see what happened to my energy as my belly filled with more and more fluid. When I met with Dr. Nagorney he said he would do a second surgery. Then my husband was fearful that I would not make it. Dr. Nagorney was so kind. He spoke with my husband by phone and explained to him what was up. My husband calmed down and in 6 weeks time I was scheduled. I wanted to be sure both Dr. Torres and Dr. Nagorney would be at the Mayo with a two window at either end. Otherwise they would have done my surgery the next day.

With my husband's help he got me on a stairmaster machine and exercised as much as I could, a full three minutes! But it was a start and by the time came about for my surgery I didn't need it.

I can understand about a huge liver size. I was just looking at my photos from long long ago and my liver was huge! really huge. I really am hopeful that relief with soon be yours.

Warmly,
Diane

On May 13, 2013, at 4:45 PM, vanessa...@yahoo.com wrote:

Thank you for taking the time to write me back. I am sure this information will help me. I do have Blue Cross of California, HMO. I called today and my prescription is still pending. I also will call Dr. Nagorney tomorrow to take a look at my CT scan... Dr. Torres also suggested I do this. I am just praying that I can tollerate the Ostreotide or Pasireotide. Either way I have no choice but to get used to it.... I can live with my liver being the size it is now but not much bigger. I hope that this drug works for me.. or at least buys me some time. I am so glad that you have shared your story and knowledge to help others like myself! Take care :) 

On May 11, 2013, at 11:50 AM, wrote:

Hello Diane! I am a 35 years old stay at home mother of two. I discovered 5 years ago (while pregnant with my 2nd child) that I had PLD. It runs in my family, (father, grandmother, aunt). I was told that I should not worry and that allot of people have it and don't even notice. I wish I had been less trusting and did more research 5 years ago before my liver really started to grow. I took birth control for 15 years, and had four pregnancies 2 live births. I was on fertility drugs and progesterone to avoid another miscarriage. A few years ago I noticed my normally flat stomach begin to grow. I thought I was just getting fat,  and started working out everyday and barley eating. Finally when I had a 6 pack but was still being asked how far along pregnant I was, I insisted my doctor take another look. Also  other problems (back pain, shortness of breath ect..) Sure enough my liver has grown so large that it takes up my entire abdomen. I had an endoscopy and my liver is pushing my stomach up, causing all the indigestion, discomfort and bloating. My local liver Dr. told me I had no choice but to get a liver transplant and to register on the waiting list. Thanks to your story and advise I decided to fly to Mayo clinic in MN to see Dr. Torres last Wednesday. Such a wonderful man, spent two hours with me and my mother. He diagnosed my PLD as Severe... Unfortunately he does not think I am a good case for liver resection (surgeon was on vacation and will look at my file on Monday) but he does want me to either join the clinical trial or start Octreotide ASAP. Dr. Hogan came in and spent another hour with me explaining the clinical trial and writing a letter on my behalf for the insurance company to get them to pay for the Octreotide. I was hoping you could give me a few tips on getting my insurance to pay for this drug if they deny my claim. If not I will have no choice but to fly from California to MN every 28 day to start the new clinical trial. That would be my last choice since I have two small children and my husband works long hours. I appreciate any tips you may have for me. I also have slowly modified my diet per your advise for the past year. 

On Tuesday, February 12, 2013 6:33:07 PM UTC-8, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

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[mde...@aol.com]

PLD has affected my mother's liver function by having cysts blocking the bile duct.

 

It seems that until problems show up in blood tests nothing is done while in the US they treat the cysts from as soon as they are found.

 

Mark

-----Original Message-----
From: Barb Seidman <bar...@aol.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[Janet Powell]

Not in my experience. I live in the uk and have been tested ( liver) on a regular basis since 2006. I have pkd and pld. My liver function is still fine, my kidneys are failing 

Sent from my iPhone

[Junk Mail]

I don't think here they treat the cysts until we start complaining. 

Sent from my iPhone

[mde...@aol.com]

My liver is working ok too but my mother had liver cysts stented twice due to blocked bile ducts.

 

Mark

[mde...@aol.com]

My liver is working ok too but my mother had liver cysts stented twice due to blocked bile ducts.

 

Mark

-----Original Message-----
From: Janet Powell <mick...@hotmail.com>

To: polycysticliverdisease <polycysticl...@googlegroups.com>
Sent: Tue, 14 May 2013 13:28

[mde...@aol.com]

My kidneys are shot and Im on dialysis by the way.

[diane]

I have sent it to you. Thank you Denise.

Warmly,
Diane

On May 14, 2013, at 3:32 AM, denis...@gmail.com wrote:

Hi Diane,

Can you email me a number to call for Dr. Hogan?  I have a brother who is getting very large with PLD that may be interested.  Thanks!  Denise

On Tuesday, February 12, 2013 9:33:07 PM UTC-5, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

[diane]

Janet have you been successful at all in slowing down the decreased kidney functioning?

~Diane

[diane]

Mark I am so sorry to hear this.

~Diane

[diane]

Keep complaining!

Warmly,
Diane

[diane]

I have done it myself for 20 years.

~Diane

[Janet Powell]

No kidney function is declining at about 3per cent each year

Sent from my iPhone

[diane]

Janet that is very good what you are doing for yourself. I was told the average amount of kidney function decline with PKD is about 5% per year. If yours is only 3% per year keep up the good work. Whatever you are doing continue with it. Drink, drink, drink water if you can and if you are allowed.

Warmly,
Diane

[Janet Powell]

I have given up caffeine,I drink loads of water.i never add salt to anything and eat only home prepared food- preferably home grown organic.i don't like meat very much- so eat very little meat.

But I think the main thing is, I was able to take early retirement on health grounds at age 50-I am now nearly 52.so I get loads of rest,no stress(which is the big thing for me)if I get worried about anything my pain starts.

I now have time to swim and do tai chi

X

Sent from my iPhone

[diane]

Great going Janet. Enjoy your swims and tai chi. 

I too notice a big difference in how I feel if I dine out instead of eating home prepared meals.

I can immediately tell the difference if I eat a slice of papaya vs. a home baked cookie. With the papaya there is one ingredient that my body takes in and reacts to. It feels nice; digests easily; I have no symptoms. But with my home baked cookies made with spelt, coconut sugar, baking soda, coconut oil, walnuts, raisins something gave me a headache, really bad headache. I suspect it was too much coconut sugar (though it was organic). Hmmm.

~Diane

[Janet Powell]

Thankyou, I've been to a friends for dinner. She only eats organic and is vegetarian- so had a fab lunch.

Sent from my iPhone

[diane]

Sounds yummy.

~Diane

[Susan Goutcher]

I've been shown the MRI scan of my abdomen yesterday by a surgeon at Edinburgh Royal Infirmary and it was full of liver cysts from my PLD. My husband was completely horrified.  The doctor did point out my polycystic kidneys hidden under my huge liver. I've been told my only option is a liver transplant but they would not be keen to operate as I would need a kidney transplant in the future.
So complaining about the size of my stomach got me referred to the Scottish liver unit, but it was not the news I was hoping to hear. So I don't know what to do now. Has anyone had experience of a liver transplant for PLD? Or is it the two for one deal and hope they can do a kidney transplant at the same time?

Take care,
Susan.

---

From: diane <pld...@me.com>
To: polycysticl...@googlegroups.com
Sent: Tuesday, 14 May 2013, 18:56

[Janet Powell]

I was in a similar position in 2010. I went for my assessment. Met the kidney transplant surgeons and liver transplant surgeons. At that stage my kidney gfr was 35.they made a decision to transplant both liver and kidney at the same time. This was based on the fact they felt the liver anti rejection drugs would affect my failing kidneys ( they didn't feel my kidneys would cope) and if not done at the same time they me be faced with looking for a kidney very soon afterwards.

So I was put on the list for both. I am still waiting as I am a rare blood group.

Sent from my iPhone

[Susan Goutcher]

Hi Janet,

Ironically, I'm B+ blood type. I don't feel it at the moment!

Hopefully you won't be waiting too much longer.

Susan.

---

From: Janet Powell <mick...@hotmail.com>
To: "polycysticl...@googlegroups.com" <polycysticl...@googlegroups.com>
Sent: Wednesday, 15 May 2013, 9:36

[Janet Powell]

I am b+ also.my son gets married in Spain in sept- so given a choice I would have it done in oct. knowing my luck it will be August !

Sent from my iPhone

[Diane Smith]

Yes Pam from UK  got solely a liver transplant. She is doing beautifully some 9 years later. 

Sent from my iPhone 5

~Diane

[Paola Viladoms]

 Hi, 

I'm B- blood type. Does this means that if I need a liver in the future that would be a problem?

I do too feel a huge difference when eating out rather than home, first because I struggle a lot with restaurants menu, I am vegan and I follow the PLD diet so you can imagine, and every time I go to a friends house either I arrive with my own food or I explain what is that I can eat. Thank god my friends are wonderful and they understand.

Paola Viladoms

Sent from my iPad

[Janet Powell]

With the blood types it depends where you live. In the UK scandanavia Australia b+ is not very common. However in northern India it is very common.

It really interests me. Totally bizarre fact I read that there is a high concentration of b+ in Donegal Ireland. This is where my fathers family is from.

Sent from my iPhone

[Susan Goutcher]

Just read an article on the BBC website that the number of altruistic living donors has trebled in the last year. So that's good news.

http://www.bbc.co.uk/news/health-22544375

Only 8% of the UK population are B+ and 2% are B-. Perhaps I should move to Donegal to improve my chances!

---

From: Janet Powell <mick...@hotmail.com>
To: "polycysticl...@googlegroups.com" <polycysticl...@googlegroups.com>

Sent: Thursday, 16 May 2013, 4:23

[mde...@aol.com]

Janet I too have limited regular testing but that is all which is what I said.

[mde...@aol.com]

Complaining in the UK will do nothing. Octreotide is not approved for PLD use by the UK Government.

[Janet Powell]

Hmmm, I might join you :))

Sent from my iPhone

[Phyllis]

Hi Mark,

 

It was not approved for PLD use by the Canadian government either but I was fortunate that my drug plan covered the drug 100% and did not ask for a diagnosis.   That said, I had horrible side effects from the medication and was not being followed closely by the doctors as they weren’t familiar with it for PLD either.

 

Phyllis

[mde...@aol.com]

No. It should not.

 

I too have problems with restaurant and pub menus. This is not because of what is on it but the quantity of it. I resent paying for food I cannot eat so have starters as mains or snacks but these are often time constrained to lunchtimes or are not included in offers. Despite comments on menus saying we can adapt the menu for specific needs in my experience this is not the case in reality. I also am fed up with soft drinks costing more than a pint of beer when the beer is taxed heavily.

Mark

[mde...@aol.com]

I too have the supply of drs issue to contend with.

 

My nearest liver treatment/transplant service is in Birmingham (at my old hospital) 110 miles away I have been told.

Mark

[diane]

In the USA we ask for a box and take the remaining food home to eat possibly later.

But the salt, the table salt used in restaurant prepared food raises my blood pressure for days. When I go to the Mayo I eat cafeteria style, but I think  I continue to get spikes at the Mayo Clinic because:

• I am eating outside (of me) prepared food
• I am traveling
• It is cold and
• I am tired.

~Diane

[diane]

I live in Hawaii yet yearly (sometimes more frequently) I fly to the experts some 5000 miles away. For me it is well worth the travel.

~Diane

[diane]

I heard the UK had something passed on driver's licenses to enable an increase of cadaver donors as well.

This is great news indeed.

Some centers in the USA are able to divided a cadaver liver; giving a portion to a child and another to an adult.

~Diane

[Janet Powell]

Yes when drivers licences are taken out or renewed, the question about organ donation is asked.

The welsh assembly are looking to opt everyone into organ donation- with an opt out facility. This could be interesting.

Sent from my iPhone

[Janet Powell]

The splitting of livers for adult and children is sometimes done in the uk.It depends on a number of factors. But is usually considered.

Sent from my iPhone

On 16 May 2013, at 17:14, "diane" <pld...@me.com> wrote:

[diane]

Yes, I think this would greatly increase cadaver organs.

I wish something like that would be in the states.

~Diane

[diane]

This is really great.

~Diane

[Janet Powell]

I just hope if Wales brings it in, it will prompt the rest of the uk would follow.

Sent from my iPhone

[mde...@aol.com]

On Driving Licence application forms you are asked if you want to join the donor register. If you say yes (assuming you have not already joined) DVLA will note this on your licence so if needed all the details are there. This has been the case for years but has not really improved donor numbers. What has increased live donations is more doctors getting better at asking and wider publicity of the need for live donors.

 

Mark

-----Original Message-----
From: Janet Powell <mick...@hotmail.com>

[mde...@aol.com]

The UK has already looked into opting in everyone and decided that it does not increase donor rates. For whatever reason Welsh Government has decided to revisit the issue.

 

Mark 

-----Original Message-----
From: Janet Powell <mick...@hotmail.com>

[Janet Powell]

How do they know as they haven't tried it? 

If the welsh revisit the question and introduce it, it will be interesting to see.

As far as the driving licences are concerned, I disagree. All new licences are asked the question about the donor register and any renewals are asked the question. I know many people who have joined the  organ donation list when renewing licences. it also provokes conversations with friends and family.

We have a choice we either carry on as we are. doing nothing or we try to tweak things. I think any small steps forward are positive.

Sent from my iPhone

[Marianne]

Are your children all girls, I have 2 boys and a girl

Regards

Marianne

MB: 07703298550

www.varca.com 

Sent from my iPad

On 12 May 2013, at 22:36, Junk Mail <krr...@comcast.net> wrote:

My 3 children also have pkd and I'm ensuring my daughter stays away from the pill when she's at that point just in case she develops pld 

Sent from my iPhone

On May 12, 2013, at 3:51 PM, Marianne <marian...@gmail.com> wrote:

Hi Diane 

I think she should be tested. Never heard of MRI scanners in Malls in UK.

THANKS 

Marianne

MB: 07703298550

www.varca.com 

Sent from my iPad

On 12 May 2013, at 19:28, diane <pld...@me.com> wrote:

The reason it affects insurance is if she wants life insurance. Health insurance should not be a problem. Many years ago insurance upped my rates following a liver resection. I do not think they are allowed to do this anymore.

I have heard that there are some places located in shopping malls that will do an MRI to see if your daughter has liver cysts. I have been told they do not let insurance companies know about this.

Does your daughter have an alternative to hormones for birth control?

If she is willing and if this were my daughter, I would have her tested.

Warmly,
Diane

On May 12, 2013, at 8:21 AM, Marianne <marian...@gmail.com> wrote:

Hi

My daughter is 22 and on he pill- my doctor advised not to have her tested as it might effect her insurance- but I'm worried as her if she has PLD its probably growing now . Should she be tested in your opinion  Diane ? 

Marianne

MB: 07703298550

www.varca.com 

Sent from my iPad

On 12 May 2013, at 01:00, diane <pld...@me.com> wrote:

Dear Vanessa

So great you were able to meet with both Dr. Torres and Dr. Hogan. If Dr. Torres says you are not a candidate then it is likely to be true but Dr. Nagorney would have the last word as he is the surgeon. There needs to be one blood vessel that supplies the liver with blood left once they perform a resection. If this were me, I would call and ask Dr. Nagorney to please take another look at my imaging studies to see if I am at least remotely a candidate for a liver resection. In my opinion the one two punch comes from first having a liver resection followed by octreotide. The trouble with octreotide or pasireotide is not everyone can tolerate the side effects.

LIVER RESECTION

Your age is similar to Meg's when she received a liver resection at the Mayo. You can read her story

http://www.pkdiet.com/stories.php

Click on MORE

and choose MEG

OCTREOTIDE

See side effects octreotide:

http://www.pkdiet.com/pld_octreotidesideffects.php

If you will go to:

http://www.pkdiet.com/pld.php

Then to the right is a button MORE

Click the MORE button

Click RESEARCH

and read at your leisure about octreotide.

I had bluecross/blueshield.

If your local doctor agrees to give it to you, then he can bill it as major medical.

Major Medical code

J2353

Administrative Code

96372

Diagnosis codes

585.3

573.8

As a major medical, this depends on your stop pay with your own insurance. Mine was set at $2500 dollars including deductible. From then on Bluecross/blueshield would pay 100% but until then I had to pay $500 per month until my stop pay was met.

Then I applied directly to Novartis' Patient Assistance Program. It took me a long time but finally I received an exception for one year. My one year is up in July when I will have to start the entire process over again.

PASIREOTIDE

I have heard that pasireotide is much stronger than octreotide.

Should you have more questions, just write.

~Diane

On May 11, 2013, at 11:50 AM, vanessa...@yahoo.com wrote:

Hello Diane! I am a 35 years old stay at home mother of two. I discovered 5 years ago (while pregnant with my 2nd child) that I had PLD. It runs in my family, (father, grandmother, aunt). I was told that I should not worry and that allot of people have it and don't even notice. I wish I had been less trusting and did more research 5 years ago before my liver really started to grow. I took birth control for 15 years, and had four pregnancies 2 live births. I was on fertility drugs and progesterone to avoid another miscarriage. A few years ago I noticed my normally flat stomach begin to grow. I thought I was just getting fat,  and started working out everyday and barley eating. Finally when I had a 6 pack but was still being asked how far along pregnant I was, I insisted my doctor take another look. Also  other problems (back pain, shortness of breath ect..) Sure enough my liver has grown so large that it takes up my entire abdomen. I had an endoscopy and my liver is pushing my stomach up, causing all the indigestion, discomfort and bloating. My local liver Dr. told me I had no choice but to get a liver transplant and to register on the waiting list. Thanks to your story and advise I decided to fly to Mayo clinic in MN to see Dr. Torres last Wednesday. Such a wonderful man, spent two hours with me and my mother. He diagnosed my PLD as Severe... Unfortunately he does not think I am a good case for liver resection (surgeon was on vacation and will look at my file on Monday) but he does want me to either join the clinical trial or start Octreotide ASAP. Dr. Hogan came in and spent another hour with me explaining the clinical trial and writing a letter on my behalf for the insurance company to get them to pay for the Octreotide. I was hoping you could give me a few tips on getting my insurance to pay for this drug if they deny my claim. If not I will have no choice but to fly from California to MN every 28 day to start the new clinical trial. That would be my last choice since I have two small children and my husband works long hours. I appreciate any tips you may have for me. I also have slowly modified my diet per your advise for the past year. 

On Tuesday, February 12, 2013 6:33:07 PM UTC-8, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

[Junk Mail]

I have 2 boys and a girl too! 22, 17 and 16.  My daughter is in the middle. 

Sent from my iPhone

[Susan Goutcher]

I thought part of the problem was your relatives could over turn your consent and refuse to allow your organs to be donated. So best to make your wishes clear.

Susan.

---

From: Janet Powell <mick...@hotmail.com>
To: "polycysticl...@googlegroups.com" <polycysticl...@googlegroups.com>

Sent: Thursday, 16 May 2013, 21:12

[Janet Powell]

Yes I think this is the case. On the flip side they could also offer them for donation if you are against it.

The law certainly needs to be debated and updated 

Sent from my iPhone

[mde...@aol.com]

They have looked at what happened when Netherlands and Belgium changed over. 

[mde...@aol.com]

They still can overturn it under the current system. They couldnt in the opt out system as one would assume as an opt out must be stored on the database against your name and therefore abided by.

 

Mark

[Kelly S.]

Sure, I would love it.  However, the Clinical Trials website states that you must be refusing surgical intervention, or not a candidate, and I have had a resection.  I would still like to contact her though, Thank you!
On Friday, May 10, 2013 7:14:37 PM UTC-4, PLDiane wrote:

Kelly yes they are still recruiting. Would you like Dr. Hogan's phone number?

~Diane

On May 10, 2013, at 9:02 AM, Kelly S. <kellys...@gmail.com> wrote:

Is this still recruiting? I would be interested in this trial. I have taken octreotide in the past, but it has been about a year since my last dose.

 

Kelly

On Tuesday, February 12, 2013 9:33:07 PM UTC-5, Diane wrote:

Anyone interested in participating in PLD pasireotide trials? Let me know. Dr. Hogan is trying to get more funding for this clinical trial. Currently we have to go to the Mayo Clinic in Rochester MN every 28 days for blood tests and injections. (at least for the first quarter, maybe longer).

~Diane

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