3 replies to this topic

[GerryL]

http://www.youtube.c...h?v=U1wxJXDWTLU

[TeddyB]

Thanks GerryL

[pamsouth]

I Listen to this (link, Discontinuation of TKI's) late last nite before I went to bed.

If my memory is good this morning.... Below, I posted, at least some of my thoughts, from the panel, or my paraphrased version, and my own treatment and toxicity journey,  issues below.  These thoughts are only my humble version, interpretation in parts, along with my journey.  So please, your journey, treatment, choices, doctors, are totally different than mine, and I totally get that! 

The 6 expert Panel Discussion; 

1) of the issues was to stop taking TKI'S.  The panel said " the patients, doctors, financial institution, were on them, to let patients, quit taking their TKI'S, if they were at a deep response, for so many years. The panel members (6 of them I believe, from various parts of the world) were totally against stopping TKI, unless it was in a clinical trial. 

Basically, they said to remember this is cancer. TKIs have less side effects than interferon. Not sure though they thought the comparison of TKI'S were any better??  They also said, don't be jumping around on TKI'S,  because you have side effects, like a little head ache.  (lol, my thoughts), "they should take them and than, down play the side effects."   The panel expert from France said " if patient should go into a blast that would be unforgivable, " I agree!!

However I was thinking of my 8 1/2 year journey, on Gleevec and it's, quality of life and side effects, now I am at the age of 66 years old;

One being chronic Inflammation. After two years of Gleevec, a test showed; I had Ascities, which is fluid In my stomach cavities, among other things. Took out Gall bladder 2007, which surgeon said, I had a good gall bladder, but had a damaged bile duck tube due to inflammation. GFR tiny kidney filter tubes, I am at STAGE 3, kidney doc says due to inflammation.  That could be from the Gleevec ( my opinion as Gleevec causes swelling) also could be high blood pressure, I have been on  B/P Meds and diuretics for a number of years. Also I have high Ferritin levels, which is protein cells that store iron overload from liver.  Also high ferritin can be from blood transfusions and Alcoholism.  Sometime they have to filter the iron overload out of the blood. That is the way I get it.

I quit taking Gleevec for two months last summer and started taking supplements for inflammation and my Ferritin levels went Down.

Have lowered my Gleevec dose, my choice, cml doc not on board with lowering dose.

The flip side of the coin for me, is my last two Fish/PCR run on the high side of CCYR, BUT R STABLE.  so either way I look at it, there is a risk of some sort. I put my organs and quality of life  up there as important as CML. BUT THEN I AM 66 years old. This organ damage can sneak upon you and my chronic kidney disease is irreversible.  According to kidney doc, the damage may not show up in creatine and other things, until you have lost 60 % function of kidneys.

CML DOC SAYS IT IS MORE LIKE 35% damage to kidney before it show up. I think kidney doc more qualified to make that call!!

2) also panel spoke of research studies in France of the whole stem cell environment. They said patient who do good when they quit taking TKI, were the patients who  had better functions of natural killer cells, than patient who did not fair as well, with not so good NK cells. The panel also said there were ongoing studies in France, of the STEM-cell environment, but not in the US, because of logistics and other reasons. 

3). The panel spoke on taking these drugs while pregnant or quitting the TKI drugs to get pregnant. Women vs men. I did not pay to much attention to this part.

I could ramble on but this is getting wordy and my husband is waiting on me, to go for a walk.

i Tried to edit this, as  I did some cut, copy, paste, and it caused some duplicate phrases. Hope it was not to redundant.

Again the above is only my humble, random, thoughts,  with my interpretation, and 8 1/2 year journey on Gleevec.

Could be all wet, thoughts may change tomorrow, who knows.

Blessings, as we are all pioneers, whatever our journey, treatment, choices, at whatever season of life we are in. God Bless and prayers for all!

Pamsouth.