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ronnie
I thought that I would just update you......following my radical
surgery and follow up radio therapy treatment 2 years ago, I have just
had my 2 year MRI scan and am over the moon to report that it is
clear!! Fingers crossed it will stay that way. Just waiting to hear
back from the consultant to see what plan of action he is going to
take now, but at least for the time being, I have some respite!!
Sarah
sheba
I just had my consult at UCSF CCC and Dr. Chen is very happy with my
prognosis. I have an MRI on July 9th. So wish me luck!
Vey great news thank you for sharing that with me.
Sheba
mona
I have just discovered this Group after a whole day of searching the
web and having found the Rarer Cancers Forum earlier in the day. I
cannot believe that there are already seven of you out there in touch
with one another! I have felt so alone for so long. There has been no
one to talk to.
I was diagnosed with AA in 2005 and have been receiving hormone
treatment because the tumour is deemed to be too large, vascular and
dangerous to remove. The treatment was working really well with some
significant reduction in the size of the tumour. However my last MRI
showed there had been some changes including some possible necrosis
and unfortunatley some growth in size as well. The endocrinologists
and oncologists are now considering the next move. Is anyone else
having hormone treatment?
mona
ronnie
doubt she will be in touch shortly. Where are you - are you in the
UK?
I feel so fortunate that following radical surgery to remove the
tumour, which resulted in a hystorectomy, and a follow up uretha tube
repair, both of which were over 6 hour surgeries, that, fingers
crossed, I am clear 2 years after surgery.
I will now have another MRI in two years time.
Please do keep us posted on your progress - it is such a relief to
have other people in the same situation to talk to isn't it!
Sarah x
>
> - Show quoted text -
sheba
have found each other with the amazing "internets". That being said. I have
just returned home after having surgery on the 13th.
I'm just recovering now but wanted to touch base and say I have been on
hormone therapy for 1 1/2 years. So far I have no recurrence this time.
Things are positive. However I have had 3 recurrences in 10 years even with
earlier hormone replacement treatments. I am on Femara now which is working
so far.
The down part is the side effects can be painful.
I'm tired right now but feel free to get in touch with me anytime.
My email is
S
----- Original Message -----
From: "mona" <mon...@aol.co.uk>
To: "Aggressive Angiomyxoma forum"
<aggressive-ang...@googlegroups.com>
mona
Good to hear that you are home after recent surgery. Hope you are
feeling stronger by now.
I am so pleased to be able to make contact with others - it is
brilliant to know I am not alone!
You mention that you are taking Femara. I was put onto Zoladex with
Arimidex towards the end of 2005. All went well at first with some
really encouraging reductions in the size of the tumour. However, the
Arimidex really caused me problems with the side effect (joint pain in
particular). What side effects do you have problems with? It really
was rather debilitating on Arimidex and I know a lot of people
experience the same problems with the drug. I was then moved onto
Aromasin which, like Femara and Arimidex, is an aromatase inhibitor.
The joint pain in much better now but the flushes are just as bad!
All was going along quite nicely until my latest MRI in August. The
rate of reduction in the tumour had reduced over the last few years
and by this summer was showing signs of growth. The endocrinologist is
now looking to move the hormone treatment on further.
Take care,
mona
On Aug 19, 6:23 pm, "sheba" <shebasgar...@suddenlink.net> wrote:
> Hello Mona, Glad to meet another group member. It's quite amazing that we
> have found each other with the amazing "internets". That being said. I have
> just returned home after having surgery on the 13th.
>
> I'm just recovering now but wanted to touch base and say I have been on
> hormone therapy for 1 1/2 years. So far I have no recurrence this time.
> Things are positive. However I have had 3 recurrences in 10 years even with
> earlier hormone replacement treatments. I am on Femara now which is working
> so far.
>
> The down part is the side effects can be painful.
>
> I'm tired right now but feel free to get in touch with me anytime.
>
> My email is
>
sheba
Lets see.. I have a long story so maybe it would be earier to just out
line this.
In 1996 I was Diagnosed with (AA) I was 27. My first tumor was 14 lbs. !
1997 it came back this time very aggressive and I was sent to Stanford for
my second surgery, followed up by radiaton therapy and the drug Lupron,
which was given by injection monthly. ( I was part of this earily study on
lutenizing hormones).
I was watched for 5 years and then deamed cured of this rare cancer.
In 2005 I was misdiag. with a "hernia" I went untreated for 1.5 years then
I finally got insurence again to get an MRI. that's when i got the news of
a 3rd recurrence which would need a radical surgery. I had that op. Jan
24th 2007. It was a very difficult surgery and took 3 weeks in the hospital
to heal . I also recieved a colonostomy. This was to give my radiated
intestines a break. I just had that taken down and I'm celebrateing! my
belly is back!!!!
I am currently a Patient of Dr. Lee Mae Chin at UCSF comprehensive cancer
center. She was part of my tumor board and has treated a patient prior to
me.
MY Local Surgeon is Dr. Luther Cobb. He was trained at Stanford. He has
been the most helpful.
I take 1.25 mg. of Femar daily. More then that causes too much pain and hot
flashes. It's been 1 1/2 years and no tumors have grown.
Flax seed oil 1 tsp. daily - for hot flash relief
ginger tea for digestion.
other medicinal herbs that help and lots of Flower essences.