2 replies to this topic

[Marathon]

I am an active reader of everything being published here and would like to thank you all for being there and share your experiences. It is hard to express how this place helps us but I am sure you can understand perfectly what I am trying to say. I am husband of my loved wife and were hit by her dx of CML almost a year ago. We do not live in the US or the UK and we are not English native speakers either, but have found that my English skills are the door to the open world, to the global network, to places like this one that let us get information on something that really hit us hard a year ago. Just by reading and translating to my wife, we find here the information that let us look ahead with a positive mind, help us thinking that we have hope for an almost normal life to be shared with our children, little by little we find that peace we need to live, as said, an almost normal life.

However, I must admit we do not write a lot on our (her) experiences. Apologies beforehand.

Approaching one year from dx, on Gleevec 400 mg. since the beginning and meeting so far the quarterly targets, my wife is now on CCyR (I learnt all this terms here........ thanks again !!!) and so far approaching MMR (not there yet !!!).

She feels quite OK although some mild side effects such as fatigue and some weight gain.

I would like to ask a couple of questions at this stage to know your opinion/experience:

1.- I have read that some people take vitamins supplements. Blood values do not require that in our case, but I have read something on the benefits for the absorption of the Gleevec. Is there any true evidence on that? If so, which type of vitamins are recommended?

2.- Is there anything you would recommend to reduce the weight gain? The weight gain has little to do with eating too much. I guess it could have to do with fluid retention. She has started exercising little by little and feels better. She was too tired at the beginning but have found what many have experienced: exercise helps feeling better

3.- We have also considered visiting one of the many Oncs that have been named here. We feel that there is no need at this stage though  if things are running to the right direction. We keep that as a future option if needed. Questions would be on how appointments work with these Oncs. Can you just try to get an appointment, bring your complete files and ask for a second opinion or evaluating the overall situation? How long does it take to get one appointment? What would be normally the rates (roundabout) charged for this?

Well, nothing else than say thank you for creating and maintaining such a great place for people around the world. Who said that we would be better off without Internet?  Only because of this it really paid off.

Regards.

M

[Trey]

I like your use of English slang words.  Not easy for a non-native. 

There is no hard evidence of vitamins increasing Gleevec absorption, but there is hard evidence of improved absorption under acidic conditions in the stomach.  So taking acidic vitamins (Vitamin C -- ascorbic acid) would promote increased acidity and therefore promote Gleevec absorption.  I must admit that I am the only one who has ever written about this, and I used it myself, so I believe it works.  Research will need to catch up on this issue. 

Weight gain, if not due to eating, would likely be due to water retention.  That is a side effect of Gleevec.  Exercise will help general well-being but will not reduce water weight.  But exercise is a very good idea for CML patients overall.  But water retention can be dealt with by using Lasix or such drugs.

http://www.drugs.com/lasix.html

Visiting a CML Specialist is usually only necessary when there are complicating issues, or when the patient is diagnosed is Accelerated or Blast Phase.  But most often it is a waste of time.  The drugs do the real work for CML patients.  If one drug does not work, then your local Onc can switch to another.  That does not require a Specialist. 

Glad to hear that your wife is doing well. 

[GerryL]

Hi,

We've discussed weight gain with Gleevec previously, I don't think anyone has come up with a solution for it.

Fluid retention does contribute to it and also your wife may have been taking in the same number of calories as before, but doing less due to the diagnosis, which could also account for the weight gain.

I know there are a few people who have lost weight when switching to a new TKI, but whether that is also fluid retention from the Gleevec, not sure.

I haven't put weight on, but I haven't been able to lose any either, despite increasing exercise and watching what I eat. Some how that weight keeps finding me. LOL

Sorry, I'm not much help.

But glad you and your wife have found this forum. I know it has helped me, particularly in the early stages following diagnosis.