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Hello imatinib!

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Good morning everyone

 

Today I am starting on imatinib for the first time after nearly 3 years on dasatinib.  The reason is that, although I reached MMR on dasatinib after a relatively slow response, I experienced a weird side effect that has been seen very rarely - swollen lymph nodes on one side of my neck that look like follilicular lymphoma but have been proven to be reactive by biopsy.  I'm writing this thread for two main reasons - (1) to document my thoughts as I prepare to embark on this journey and (2) to give others who may be new to treatment some assurance that they are not alone if they can identify with these thoughts!

 

I have spent the last month on holiday, travelling to the Caucasus (Georgia and Armenia) and enjoying my life in preparation for this big day.  It was surprisingly easy to put CML out of my mind for the past few weeks, but, on boarding the plane back to South Africa, it suddenly all came rushing back.  I have spent the last few days of April reading about all the side effects that people experience on imatinib and, quite frankly, it is terrifying: puffy eyes, bone pain, nausea, diarrhoea, muscle cramps, rapid weight gain, swollen feet... the list is endless... and I can remember how I felt when taking my first dasatinib tablet.  It is as if one's life will never be the same again and the fear of the unknown is great: which side effects will come?  When will they make their appearance?  How can they be managed and how bad will they be? And which ones will hang around for ever, like unwelcome house guests, and which will disappear?  The uncertainty is dreadful.  Furthermore, there is an even more important concern:  will the drug work and will it be able to keep this disease at bay?

 

One of my biggest fears is that imatinib will change my appearance forever, and I am in dread of the puffy eyes and rapid weight gain.  I believe I can handle most of the other side effects, but this one is huge for me.  Unfortunately the dasatinib changed my hair colour to grey almost overnight, and I eventually got used to the insensitive and careless comments that people throw around regarding one's appearance.  It isn't out of vanity, but rather because seeing one's appearance change is a daily reminder that one is living with a very serious disease.  

 

I am also worried about the fatigue - as an unmarried, nearly 40-year-old man with very few family members, I really have only my work, which I love.  On dasatinib I was able to work my normal day, but I found that I often had lapses in concentration as I became tired.  It is also difficult because this disease is expected to be so "mild" - so many people say that we are lucky to have CML and not one of the other cancers.  Furthermore, some people see me at work and say, "Is the cancer gone yet?" or "When are you stopping treatment?"  Being on chronic medication isn't easy, but at the same time we have so very much to be grateful for - without these wonderful drugs, I know that I would be dead by now!

 

Good luck to everyone and thank you so much for all your support throughout the three years that I've been on this forum.  Just having this space to write, to read others' experiences and even to vent when necessary is an enormous help.

 

Best wishes for your continued recovery.

 

Martin

 

 

Hi Martin, I have been on 600mg Gleevec for going on to 3 years now and feel great. No difference then before CML. I never read about the side effects, it’s all, “can” have. So don’t dwell on it. In my experience on weight gain, I tell my wife it’s the gleevec but she knows it’s Ben & Jerry ice cream. As far as appearance, I’m still quite the “GQ Guy.” Unfortunately, gleevec  won’t improve your appearance. I was hoping to have that rare side effect of the hair pigmentation, but I settle for highlights now and then. I can understand that changing meds is difficult as we like consistency. I’m sure you’ll do fine. The important thing is good response.

 

Hi Martin 

just wanted to wish you best of luck on the new drug and thanks for sharing your feelings. I hope this next chapter is much less of a rough ride for you.

Also wanted to suggest you add some Curcumin to your pill intake. My husband’s pallor has definitely improved and it ( plus dosage reduction on Sprycel ) have def helped with his swollen eyes. It’s also good for heart health and many other things, so psychologically it’s made him feel good that he is taking something that will contribute to his overall health !

I bet you are a fantastic teacher and thanks for sharing your CML story with all your kids. This world needs more compassion :) 

Best wishes Louise 

Hi Martin, thanks for posting this. I have a few thoughts in response.

I've been on imatinib for about 13 months now after diagnosis April 2017. Unfortunately I do have the dreaded puffy eyes and weight gain, and whatever "good looks" (it's in the eye of the beholder, of course!) I may have had are gone. But I always remember what my mom said while I was growing up, that "pretty is as pretty does." The most beautiful people in the world aren't really beautiful if they aren't kind, right?

My wish for my young adult sons is not that they find wives/partners who are beautiful, but that they find someone who loves and understands and is kind to them. That is what I try to be for my husband and what we all can aim for in how we treat all others. That pertains, regardless of our appearance.

Fatigue is another matter, but it just means we need to pace ourselves and acknowledge our limitations.

All that aside, it is reassuring to see posts from others that side effects can and do change over time, so that whatever we are experiencing now could dissipate in the future. Dose reduction and TFR are other possibilities for many of us, and that is encouraging as well. Who knows, maybe in our lifetime there will be an actual cure. A generation ago nobody would have thought that we would be where we are now in CML treatment.

Let's not lose hope!

Justine

I’ve been on 400 mg of Imatinib since October 2015 and honestly, I have found the side effects quite minimal.  I experienced the horrible bone pain people talk about for a couple weeks when I first started but then it completely went away.  I haven’t gained  any extra weight, and although I can tell a very small difference with my eyes, it’s only noticeable to others when I have really high sodium foods and not enough water the night before.

I am quite fatigued at times but I think that’s the case with all TKI’s and not necessarily unique to gleevec.  Huge suggestion though, wait 45 min to an hour after eating before taking your meds - when I do this I rarely experience nausea.

Hope this helps a bit.  Remember that most symptoms will balance out a ton after the first 3-6 months.