72 replies to this topic

[CallMeLucky]

"If the theory of all people min BCR-ABL will eventually cause full blown  CML with time, hold 100% true; this will mean that all the doctors in  the STIM trial are sending their patients to a death route. Do you think  that the doctors did not weigh the risk and putting the patients to  risk just for the sake of experiment ? Which means the doctors are  incompassionate and treating patients as lab rats."

I won't go so far as to say it is done without regard or compassion because I do not believe that is the case, however if you think doctors are not experimenting everyday with people's lives then you are not fully appreciating the current state of medical research.  I think that with any cancer the term cure is very tricky.  How often has someone relapsed years later from a cancer?  Were they cured and just got it again or were they never fully cured?  I don't know, but I think the STIM trial is absolutely an experiment.  It is controlled and they are watching to see who relapses and get them back on drugs right away.  The fact that research has shown that when it does relapse TKI seems to continue working enables them to do this with less risk.  No one is taking away TKI and sending them on their way.  STIM trial has constant PCR testing.

[valiantchong]

What I am trying to say is, there is 5% chances these patient are functionaly cured, as Dr. Valent from France put it, even though they do have MRD and are off drugs, some are 5 yrs. Hence I do believe there is a mechanism which we do not understand why it is working on just 5% of individuals, where is the missing link. As you put it, it may be the immune system or something else. I just want to stress my opinion base on present statistic of these 5% unexplained cases of hope towards cure. And has no intention of putting false hope to anyone or parroting invalid statement without thinking in this open discussion.

[CallMeLucky]

I get what you are saying and I don't think it is false hope.  All hope is false hope when it doesn't come true!  I would rather be hopeful and you are right there are people who have/had CML and are maintaining their remission without drugs.  They are a small percentage and understanding why they are able to do it could lead to a better understnading of the disease and perhaps a way for more of us to acheive a durable drug free remission at some point.  Although, and I hate to say it, there is a lot more profit in keeping us on drugs.  I trully hope for the best in people and wish that would not influence research, but sometimes I am cynical/realistic and know that it does.  Hopefully in competition the cure will be discovered and find its way out to all of us.

[Trey]

So how are you doing, Michael?  Feeling a wee tad hijacked?  Do they make a cyber LoJack?  Sure could use one about now.  This thread has been stolen, ransacked, stripped, and the parts sold on CraigsList.

[scuba]

It was interesting to read, Trey ...  lots of cross currents on what constitutes disease and all.

Actually - I have a problem.  My counts are staying very low (danger zone).  My Neutrophils as recorded by ANC are below .1

I have these horrible mouth sores (along gums), but no fever.  As long as I have no fever, I don't go to the emergency room.

I have been off Sprycel for several weeks and my counts are not rising.

This is one strange disease.  It appears that Spyrcel has definitely done something (not like Gleevec).

I feel fine except for the fear I might get an infection at any moment.

I no longer believe that these drugs work for me.  My body chemistry is just a little bit different and myelosuppression is severe in my case.  All the docs want to do is wait.

Personally - I am looking into alternative approaches based on nutrition:

http://www.lef.org/p...leukemia_01.htm

Recall - I never really had very high WBC's when I went to the doctor last May.  My counts were abnormal, but not like most of you - i.e very very high WBC's with pain in Spleen. 

For whatever reason - the TKI's are not working for me.  And now - even without the drugs for over two weeks, my counts keep dropping.  All the docs want to do is, test, come back in a week ... test ... come back in a week.  For all I know my own body is attacking the WBC's.  Wouldn't that just be grand.

[valiantchong]

Hi,

Mine WBC was low too, lowest at 2.3, recently 2.9. ANC lowest at 0.9, that is when I got sensitive tooth and tooth pain.

For me, I am taking G at 400 mg. If you want to try nutrition, may be beet root juice, wheat grass or Reishi (Lingzhi mushroom) could help.

Hang on there I believe your count will get better soon.

[rct]

I'm sorry this is happening Michael.  I don't know why they don't shoot you up to make sure the system will respond to crisis, but that is the dox call.

I'm thinking about you every minute of every day, hoping this works out.

To bring this thread back from the very brink of Hijack:

See, if they could prove conclusively via research and trial and testing, that the general population has low levels of BCR ABL but doesn't have CML, I'd be at the Cancerre Emporium every week helping them figure out why I don't and My Mrs and you do.  So we could fix it.

That's what ticks me off about that stuff and why it shouldn't just be tossed about like that.

So hang in there, which sounds awful trite I know.  If it goes much longer, ask for a shot to make sure it all works.

rct

[jwbwater]

Hi Michael,

I'm sorry you're having so much trouble with Sprycel.

The waiting part of CML treatment is the hardest for me.  I would be frustrated if I were you and like you I would look for something I could do to improve my chances of getting good results.  The additional benefit of doing something is the feeling of being able to fight back which has benefits of its own:

http://cancerres.aac...32/7/1428.short

The only downside is the possibility of doing something that actually supresses the immune system further which is why I try to read a lot and why I decided to try working with a naturopathic oncologist.  I get a lot of eye rolling when I tell people I'm seeing a naturopathic oncologist, but he's more science based than my regular oncologist, though I imagine that's not the case for all naturopaths. 

My favorite book about natural and complementary therapies right now is "Natural Strategies for Cancer Patients" by Russell Blaylock, M.D.  It has a section on stimulating blood cell production that recommends several suppliments.  I don't have the book with me right now, but if you're interested I can tell you what the suppliments are this evening. 

If you want to look for a naturopathic oncologist you could look for one through the Oncology Association of Naturopathic Physicians.  That's how I found mine. 

http://www.oncanp.org/

I wish you the best, I hope your white blood counts recover and Sprycel ends up working for you.

Jim

[valiantchong]

Hi Jim,

Would appreciate if you could share with us on some of your knowledge or recomendation on the nutrition for CML.

Thank you,

VC

[jwbwater]

Hi VC,

The nutritional recommendations for cancer patients I've seen suggested by several credible sources are:

- Don't eat refined carbohydrates

Cancer cells have about 10 times more insulin receptors than healthy cells so spikes in blood sugar feed the cancer cells disproportionately.  This means avoiding sweets, soft drinks, white rice, white bread, white pasta, etc.  You can substitute brown rice for white rice and whole wheat pasta or brown rice pasta for white pasta.  If you're going to eat something sugary like fruit it's better to eat it after a meal so there is some protein and fat to slow down sugar absorption.

- Reduce consumption of Omega-6 fatty acids

Omega-6 fatty acids tend to promote inflammation and cell growth.  These fatty acids are found in corn oil, soy oil, sunflower oil, safflower oil and to a lesser extent canola oil.  These oils are ubiquitous in processed foods so  avoiding these oils can be difficult unless you prepare your own food.  In addition since the US government subsidizes corn and soy they are used as feed for most industrially produced livestock.   When cows eat corn and soy instead of grass (which is high in Omega-3 fatty acids) their meat and milk (and therefore cheese made from that milk) are also high in Omega-6 fatty acids.  I used to wonder why some people made a big deal about grass fed beef, this is why.  That said even grass fed beef is not a great choice for the average cancer patient because it's high in absorbable iron, which cancer cells need for DNA replication.  

Olive oil is the way to go for oils since it has the lowest levels of Omega-6 fats.  I wish I could give you a good solution when it comes to meat, but unless you know someplace to get chicken, turkey or pork that's not fed corn and soy this is a tough one.  Right now I don't eat many animal products, just yogurt and milk from grass fed cows or goats and small amounts of wild fish (farmed fish are also fed corn and soy).  I also suppliment docosahexaenoic acid (DHA), an omega-3 fatty acid found in wild fish that has been shown in in-vitro studies to increase the effectiveness of gleevec.

Historically mankind has eaten a diet with an omega-6 to omega-3 ratio of about 2 to 1.  Today the typical american diet is closer to a ratio of 20 to 1.  

- Eat a wide variety of foods especially vegetables and culinary herbs

Many vegetables and herbs contains compounds that have anti-cancer properties.  Green tea and tumeric are two of the most widely researched but there are many others including: cabbage, parsley, rosemary, oregano, tomatoes, carrots, kale, brussel sprouts, spinach and celery.  There are undoubtedly many other natural compounds with anti-cancer properties that have yet to be identified. 

Humans cannot digest the cellulose found in the cell walls of plants so in order to get the maximum nutritional benefits of eating these foods you have to either chew them to a fine mush, juice them, blend them or cook them, but cooking destroys some of the beneficial enzymes.  I'm becoming a big fan of juicing because it allows me to consume many more vegetables than I could possibly hope to eat whole. 

Hope this helps.

Jim

[scuba]

RCT:  I reconfirmed with Dr. Cortes.  He wants me to stay the course.  No stim and no Sprycel until my counts recover.  Apparently the Sprycel has done a good job of knocking down the CML in his words and he believes my normal system is kicking in.  He tells me to be patient that this is "normal".  What is happening is my marrow is getting cleared and the normal system will make up the void.  It is amazing how slow this process is given that WBC's don't last long in the blood.

After my counts recover above 1.0 (ANC) - I am back on Sprycel at 50 mg (lower dose).  And if necessary and the counts drop below 0.5 again, I go off again.  He anticipates it will be longer and better over time and eventually my blood system will be normalized and the CML system replaced.

He does not want to do stim shots.  I didn't really get an answer why not.  Maybe there are new studies showing start/stop as a new protocol?  He did tell me he has done this with other patients to good success with the newer TKI's.

[Tedsey]

Michael,

Well, as rct has put forth and from what I have read, there is a possibility that the stim shots can cause the CML to get worse (and there is some support for some people with other disorders that cause neutropenia receiving G-CSF coming down with leukemia--but who knows if it was going to happen anyway).  Although these drugs are used for people with CML, there is still a warning that the safety of GCSFs in people with CML and myelodysplasia has still not been established (well, so says for Neupogen, but is probably so for all G-CSFs).

Nevertheless, it makes me nervous that they are sending you out into the world with such low ANC.  Perhaps I am just brainwashed into thinking that you need to shoot a person up to help avoid a serious bacterial infection (as you know, that was the route I went).  I guess, since there is no great support any way (shot or placebo or nothing), except GCSF-use better studied in AML cases where it seems to be OK, you may not have a real risk of coming down with a severe bacterial infection you cannot fight than CMLers on TKIs who get shots (gotta differentiate between those who have other things causing neutropenia, like chemotherapy, hepatitis, etc.-- cannot lump it all into one category).  And there is probably more to the immune system fighting off bacterial infections than just neutrophils (I plead ignorance here).  And there are some otherwise healthy people with normal ANC that come down with life-threatening bacterial infections.  I know someone.  So, the use of G-CSF appears only an "educated" guess in some instances, and/or drug companies trying to push it to make a buck.

Not to question his expertise, for I am nowhere near an expert, but I would really want a full explanation from Dr C as to why he does not want to do anything about ANC .14 or under .5 and if he is doing the same for all his CML patients with neutropenia.  It would be more settling to hear from him that the research is inconclusive about CMLers and TKI-induced neutropenia getting sick, or there is now pretty good support that the GCSF can stimulate the growth of leukemic myeloid cells.  That would make sense.  (However, in rct's wife's case, she is still PCRu despite the shots,--but one person does not make a research study or a statistic).  Otherwise, it looks like you may be a science experiment.  This practice could be unethical if it puts you in harm's way unless you knowingly agree and go along with it.  Nevertheless, I am sorry you have to go through this.  Again, best of luck.

I can relate to the mouth sores.  I feel your pain; literally!  They suck!  But my neutrophils have creeped up to the low-normal range.  So, there could be other contributing factors besides low ANC.

Teds

[scuba]

Hi Tedsey,

Trey put it best earlier - there are overlapping functions of the white cells.  My esonophils, basophils and other white cells are normal.  It is only the Neutrophils that are very low.  When it comes to blood infections, the other white cells come into play and fight bacteria, not just neutrophils.  Neutrophils are used in abundance for the mucous membranes lining the mouth, nose and other areas.  And sure enough - those are the areas I am having trouble - although it is decreasing.

The doctors are not scientists.  They are artists and guess at what you need.  As long as I am not "sick", they feel free to experiment within the range of the protocols.  I know that Dr. Cortes does not like the stim shots.  And he wants me to do it this way - so I follow him.  It is easier on me that's for sure.  I have been off Sprycel for over two weeks now.  ANC at last test was 0.14 (that's low), but is probably higher today.  I have a suspicion that if my other white cells were very low, they would be doing something different.

I feel fine (except for the mouth sores which hurt when I eat - and no wine, since alcohol really aggravtes them) and expect my counts to rise slowly and then I go on Sprycel again.  As long as I have little or no blast cells - they will proceed this way.  Dr. Cortes expresses confidence that my system will recover just fine and that the Sprycel will put me into remission.  It just will take many many months of this.