9 replies to this topic

[AmyH]

How long did it take for all of you go to where the CML is not detectable?  Does that happen for everyone? 

Vitamins - Do you take any? 

Have any of you tried any holistic approaches? 

I'm feeling a little better.  Not as tired as I was before and the knots I had are going down or have all disappeared.  Brusing is almost gone too!  My WBC had not went down at my last appointment, but I'm hoping at my next appointment on Wednesday they are going down some.  I want to stay on Gleevec because I don't really have any side effects.  My hips, legs, and lower back burn sometimes, but thats about it. 

Also, when your spleen was going down did it hurt?  My side hurts sometimes and I was wondering if that was normal. 

Thanks guys! 

~Amy

[tiouki]

Hello Amy,

First of all glad to see that you are feeling better, plus that you do support gleevec well ! This is great!

There are different definitions of CML not being detectable :

-First you should get an hematological response = your blood formula is normal (normal white counts in particular) and your spleen is not enlarged anymore. Most people get it within the first weeks/months.

-The second step is called the "cytological response". It is measured through a bone marrow biopsy every 3 months : they count the number of leukemic cells in the marrow. They goal is to achieve a complete cytological response (= 0% of leukemic cells observed, in other words they observe 50 cells approximately and none is leukemic). At this stage it doesn't mean that CML is gone but the number of leukemic cells is limited so you can't observe it when you count "only" 50 cells. It takes between 3 months and one year to reach this stage.

-The last step is called the molecular response : it is a more sensitive measurement that detects the number of mutant proteins in your blood, the "BCR-ABL" one, that is the target of gleevec. A molecular response is expressed in percentage (compared to a control protein). The aim is to get a major molecular response that is a ratio <0.1% approximately. The aim is to reach it within 12 to 18 months. The final step is to get a complete molecular response = a ratio of 0%. Not everyone will reach this stage (which is also called PCRU  for PCR undetectable, PCR being the name of the test)

As you can see, there are several measurement of the remaining CML you have, and it takes time to get to the final response that is at least a complete cytological response and preferably a major molecular response after one year or so . But it's a long run fight and it's one battle at a time.

Personally I don't take vitamins but I think some people do, that can't hurt. If you get cramps you can take some magnesium that should help.

My spleen didn't hurt but the doctor told me that it depends and it could be the case for some people.

Good luck with all of this, I am sure your counts will be back to normal soon

Pierre

[AmyH]

Where are you at on this journey?  How long did it take you to actually get there? 

[pammartin]

Hi Amy,

I just visited my doctor on Friday, and much to my surprise my leukemic cells (am sure there is a technical term I am missing) have went from 87% to less than 1%.  I began this journey on October 2011, began Sprycel shortly after, then (I had a rough start) with little response and although white count was responding my platelets were headed toward 2 million, I had to take Sprycel 140 mg and Hydrea 2000 mg daily for two weeks.  I did bottom out then, white count/platelets went way below normal ranges, but since then I have been staying fairly level, although the low side of the ranges, so I went almost 3 weeks without any medication, within a week my platelets began to rise, so as soon as white count was on the low side of healthy I went back on the 140 Sprycel.  I will tell you counts go up/down and back up/down again, they will never stay exactly the same, there are just too many factors in the body and room for movement.  Many people have difficulty in the beginning, his/her counts seem to continue to rise, to suddenly drop to healthier levels.  I will not have the latest results for a week or so, but if I continue to stay below 1%, the doctor will consider dropping the Sprycel to 100 mg daily, I posted on another page of yours, although I am excited about the possible reduction, I am also nervous, because my initial response to this dosage was not productive.

In answer to your question, I have been on meds less than 3 months because of that 3 week break and it took a while to get the Sprycel approved, I will be at three months taking TKI continuously the end of this month (January).  I am thankful for my response, to be honest I was not expecting this news, because initial response seems to have merit in long term response to meds, I do realize it is early, so I am thankful for what I have today, and will worry about the next round of bloodwork a week from Monday!

I hope you have a great day. Take Care

Pam

[tiouki]

Hey Amy,

I started sprycel in September after 1 month hydroxyurea. (I had 400k white cells at diagnosis and 50k after hydrea). I had 20/20 leukemic cells in the marrow (100%) and a molecular value (PCR) of 65%.

My counts went back to normal in about one month and my spleen was not detectable (hematological response) . Actually they were slightly below normal for some time (this happens a lot at the beginning of the treatment but after a couple more months I was totally normal).

I had a bone marrow biopsy after 2.5 months. The PCR was 2% at that time. They didn't give me the number of leukemic cells yet (I'm still waiting...) but 1-2% of PCR is usually associated with 0/50 or 1/50 leukemic cells so I think I was probably close to complete cytologic response.

My next appointment will be the 7th of February (after 5 months), I hope my PCR will be close to major molecular response (0.1%) and that the marrow will confirm the 0% (0/50) leukemic cells ( = complete cytologic response).

But here again everyone is different, plus sprycel is usually faster that gleevec to reach the different checkpoints

[CallMeLucky]

This will answer all your questions with regards to treatment and testing.

http://www.nccn.org/.../index.html#/1/

[hannibellemo]

Pierre,

Just a tiny correction. The CCyR does not need to be ascertained by a bone marrow biopsy/aspiration. FISH (fluorescent in situ hybridization) can also be done on peripheral blood. In my first three years I have had only 2 BMBs and Mayo only does FISH until CCyR, at least my physician does. He feels that a PCR every 3 months is too difficult psychologically/emotionally for patients  and doesn't see any reason to subject us to that until we reach CCyR and at that point there is no choice. In my book, any testing is grueling psychologically .

Pat

[Trey]

Response rates vary widely, and there are many factors involved, mostly involving how the individual's body processes the drugs (i.e., uptake from the alimentary canal, and then cellular uptake from the plasma).  The response rates also vary for each drug.  I attempted to quantify that in the following link:

http://community.lls.../message/116539

Pierre's statement of the goals is a bit over-optimisitc.  The most widely accepted goal for CCyR is 18 months, and there is no firm goal for MMR (3 log reduction), although  2 years is sometimes used as a rough goal.  There is no timeline goal for CHR (PCR undetectable) since it is often only achieved over the longer term by many patients. 

Eating healthy foods, taking vitamins, and other approaches may be helpful for overall health, but have little (if any) impact on fighting the CML.  But when first diagnosed and with high cell turnover, it is a good idea to take vitamins (esp getting extra Vit C and folic acid).   But the TKI drugs do the real work fightling the CML, not the vitamins, etc.  Some were very healthy-eating vitamin-taking high-exercise ultra-fit people at diagnosis.  Others were cheese-wiz eating couch potatoes. 

Some people are faster responders than others.  Some need higher dosage.  Some have side effects and resultant quality of life issues that limit dosage.  I did well on 400mg Gleevec, reaching PCR undetectable in well under a year, but that is very unusual.   Others do better on Sprycel or Tasigna than Gleevec.  Overall, roughly 95% of us will do well enough on the drugs.  "Steady wins the race."

[Judy2]

HI Pam Martin,

Congratulations on the less than 1%!!!  I'm assuming this is the PCR test. I am so glad you are finally getting good news, I think it's time to celebrate. Skip fixing up the new house this weekend, go out to a nice restaurant and have a good time.

Judy

[markmendonca]

thats great wow go girl