Treatment

[Guest guest]

- I would leave a spleenectomy as my last choice. Have you had FCR before? I do not recall.....

In a message dated 3/10/2009 7:29:38 P.M. Eastern Daylight Time, dcdtip@... writes:

My doctor has recommended that I start a clinical trial with FCR+Avastin. The regiment is for six cycles, four days in a row with twenty eight days in between cycles. The Avastin is not an FDA approved drug for CLL so it is given free on this trial.

I was dxed with CLL in June of 2001, was watch & wait till November 2004 when I had six cycles of FCR. I obtained a CR but then started to relapse in June of 2007. My platelet count never got above 100 after the fifth round of FCR. In October of 2007 I developed ITP. The ITP was brought under control with cyclosporine. I stopped the cyclosporine in March of 2008.

Currently my spleen is some what enlarged and I have a large node in my groin and arm pit and my platelets are at 48. I know I need to consider what is next in the way of treatment, however, FCR+Avastin seems very toxic to me. Would it be reasonable to first try Rituxan, IVIG or a splenectomy before heading into such a heavy duty treatment?

If Dr Furman could weigh in on this I would appreciate it.

Thanks,

age 64

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[Guest guest]

,

It will be important here to determine whether your thrombocytopenia is the

result of bone marrow not making the platelets or them being destoryed in the

periphery. Have you had a recent marrow?

It is hard to make treatment recommendations without seeing you. There are many

clinical trials that are testing new agents in this setting to take a look at as

well.

Rick Furman, MD.

>

> My doctor has recommended that I start a clinical trial with FCR+Avastin.

> The regiment is for six cycles, four days in a row with twenty eight days in

> between cycles. The Avastin is not an FDA approved drug for CLL so it is

> given free on this trial.

>

> I was dxed with CLL in June of 2001, was watch & wait till November 2004

> when I had six cycles of FCR. I obtained a CR but then started to relapse in

> June of 2007. My platelet count never got above 100 after the fifth round of

> FCR. In October of 2007 I developed ITP. The ITP was brought under control

> with cyclosporine. I stopped the cyclosporine in March of 2008.

>

> Currently my spleen is some what enlarged and I have a large node in my

> groin and arm pit and my platelets are at 48. I know I need to consider what

> is next in the way of treatment, however, FCR+Avastin seems very toxic to

> me. Would it be reasonable to first try Rituxan, IVIG or a splenectomy

> before heading into such a heavy duty treatment?

>

> If Dr Furman could weigh in on this I would appreciate it.

>

> Thanks,

>

> age 64

>

[Guest guest]

,

Yes I completed six rounds of FCR in April of 2005

On Tue, Mar 10, 2009 at 7:24 PM, <jb50192@...> wrote:

- I would leave a spleenectomy as my last choice. Have you had FCR before? I do not recall.....

 

In a message dated 3/10/2009 7:29:38 P.M. Eastern Daylight Time, dcdtip@... writes:

My doctor has recommended that I start a clinical trial with FCR+Avastin. The regiment is for six cycles, four days in a row with twenty eight days in between cycles. The Avastin is not an FDA approved drug for CLL so it is given free on this trial.

 

I was dxed with CLL in June of 2001, was watch & wait till November 2004 when I had six cycles of FCR. I obtained a CR but then started to relapse in June of 2007. My platelet count never got above 100 after the fifth round of FCR.  In October of 2007 I developed ITP. The ITP was brought under control with cyclosporine. I stopped the cyclosporine in March of 2008.

 

Currently my spleen is some what enlarged and I have a large node in my groin and arm pit and my platelets are at 48. I know I need to consider what is next in the way of treatment, however, FCR+Avastin seems very toxic to me. Would it be reasonable to first try Rituxan, IVIG or a  splenectomy before heading into such a heavy duty treatment?

 

If Dr Furman could weigh in on this I would appreciate it.

 

Thanks,

age 64 

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[Guest guest]

Dr Furman,

I haven't had a recent bone marrow so I'm not sure the cause of reduced platelets. I'll look in to that

Thanks

On Tue, Mar 10, 2009 at 6:56 PM, rrfman <rrfurman@...> wrote:

,It will be important here to determine whether your thrombocytopenia is the result of bone marrow not making the platelets or them being destoryed in the periphery. Have you had a recent marrow? It is hard to make treatment recommendations without seeing you. There are many clinical trials that are testing new agents in this setting to take a look at as well.

Rick Furman, MD.

>> My doctor has recommended that I start a clinical trial with FCR+Avastin.

> The regiment is for six cycles, four days in a row with twenty eight days in> between cycles. The Avastin is not an FDA approved drug for CLL so it is> given free on this trial.> > I was dxed with CLL in June of 2001, was watch & wait till November 2004

> when I had six cycles of FCR. I obtained a CR but then started to relapse in> June of 2007. My platelet count never got above 100 after the fifth round of> FCR. In October of 2007 I developed ITP. The ITP was brought under control

> with cyclosporine. I stopped the cyclosporine in March of 2008.> > Currently my spleen is some what enlarged and I have a large node in my> groin and arm pit and my platelets are at 48. I know I need to consider what

> is next in the way of treatment, however, FCR+Avastin seems very toxic to> me. Would it be reasonable to first try Rituxan, IVIG or a splenectomy> before heading into such a heavy duty treatment?>

> If Dr Furman could weigh in on this I would appreciate it.> > Thanks,> > age 64>

[Guest guest]

My husband is 17p- at 20% so far he is on ww, his doctor has mentioned a

clinical trial Phil my husband still feels okay but his wbc have doubled as well

as his lymph count. We were wondering should he get treated even though he is

feeling okay because of his deletion?

Thanks

Melody/Phil

[Guest guest]

Hello Margaret

I think the very first thing you should work out is whether you

want your GP to look after your thyroid health, or whether you want to take

your thyroid health into your own. Unless you have a GP that has been well

trained in endocrinology and understands the functioning of the thyroid, then

it might be a waste of your time, especially as, like me, our best years are

behind us and we want to start living a good healthy life for the

years we have left. There are very, very few doctors in the UK who have the

knowledge as we are finding out. If we are lucky enough to be given a

diagnosis, they start us on low dose thyroxine (which is ridiculous unless you

have a heart problem) and then decide whether to raise or decrease your dose

according to thyroid function test results, which are pretty useless once you

are on thyroid hormone replacement. Never do they examine patients, check out

their symptoms and 'signs' and if your results show ANYWHERE within the ref.

range, they will tell you that your thyroid function tests are fine and

therefore you don't need your dose increasing.

It would be really good to work with your doctor, but it would

be even better for your doctor to work with you, but more and more, we are

finding this is a one way situation. Your doctor tells you what to do, and

that's that.

No No No!

First you need to ask your GP to test your levels of iron, transferrin

saturation%, ferritin, vitamin B12, vitamin D3, folate, magnesium, copper and

zinc. When these results come back, post them on the forum together with the

reference range for each of the tests done and we can then take it from there.

The adrenal stress test done by the NHS ONLY tell you whether

you are suffering with 's Disease (too little to no cortisol secretion)

or Cushing's Syndrome (too high a level of cortisol secretion) and does not

test for any of the stages leading to either of these conditions (Adrenal

Fatigue), so we have no option but to get this test done privately.

As I am more than keen to get as fit as I can before my husband needs further

chemo, I decided to have some tests done by Genova. The results were:

Iodine;

33 (100-199). I have increased my consumption of fish, cheese and eggs. It might help you further to supplement with Iodine -

Read the attached document speech by Dr Peatfield at one of our TPA meetings).

Adrenal

Stress; Cortisol 14.3 (12-22), 2.7 (5.0-9.0), 2.9 (3.0-7.0), 1.2 (1.0-3.0) DHEA

0.13 (0.10-0.50) Definitely suffering with adrenal

fatigue (low adrenal reserve). First test should show your cortisol at it's

highest to get you through the day. Second and third are both below

outside the bottom of the range and the one when you went to bed is the only one

that is where it should be. You need to start to increase your Nutri Adrenal Concentrate

every 2 to 3 weeks until you find the dose that takes away your symptoms.

Free

T4 9.25 (10-22) For those not taking any form of

thyroid hormone replacement, their free T4 should be above the middle of the

reference range, which means that yours should be around 17.

Free

T3 5.14 (2.8-6.5). This is unusual for somebody not

taking thyroid hormone replacement.

TPO

1000 (0-35) This result shows that your hypothyroidism

has been caused by an autoimmune disease called Hashimoto's. Antibodies see

your thyroid gland as public enemy number one and the antibodies set about its

gradual complete destruction. Treatment for the hypothyroidism remains the same

as any other cause - but it is up to you to decide whether you want to go down

the NHS route and start levothyroxine (which is not an active thyroid hormone).

It has to convert to the active hormone T3 and for a lot of us, especially as

we get older, this doesn't always work as there are many conditions that can

stop it - so they need to start taking T3. Many people do very well starting

natural thyroid extract and some great doctors will prescribe this for their

patients, even though it remains unlicensed within the NHS - so you could

always ask your GP first, and if he refuses, then consider taking this matter

into your own hands, as many of us do, and found it to be completely successful.

We can help with any questions etc etc. so just shout. Check out our FILES

SECTION which is accessible from the Home Page of this Forum, and in the list

of alphabetical folders there, click on 'All Natural Thyroid Extract' and you

can see all the information you are likely to need there.

I

am in the second week of taking Nutri Adrenal Concentrate and my Postural

Hypertension is improving. What would help here too

is Niacin (vitamin B3) (the flushing kind) 300mgs daily and CoEnzymeQ10,

300mcgs daily. Both natural products.

Would

it be a sensible decision to go back to my GP and accept his offer of low dose

Thyroxine and supplement the treatment myself with Nutri Thyroid Concentrate? It's always a good idea to discuss your thyroid health

with your GP but be determined that you don't have to go down the route he lays

out if you don't want to. Your doctor should listen to your preferences and be

prepared to work with you, whatever your choice. At our age Margaret, we have

to think about our future and get back our health as fast as we can and I know

which route I would follow.

Read Doctor Peatfield's book 'Your thyroid and How to Keep it

Healthy' available from Amazon.

Luv - Sheila

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Dr Peatfield's speech.doc