19 replies to this topic

[Frogiegirl]

I'm beginning to see the horrible long lasting side affects of the tki's I'm on. I am tired of dropping weight and losing SOOOOO much hair! How is it a man twice my size is on the same dose????  I have been contemplating going to 450mg of Tasigna instead of the 600mg I have been on. I'm new to this whole rollercoaster, five months is all. I do not want to have to shave my head and buy a wig if its not necessary but at this rate it is looking that way. I'm down 20lbs  and I drop about a pound a week. do I tell them I'm going to do it, so they can do labs more often? or just try it? I don't want to step backwards but how else will I know??? any advice.

[mariebow]

  Frogiegirl, I think you need to talk to your Dr about it first, if you already have, ask them again.  I have been on half a dose for two years, 150mg of Tasigna twice a day and got to MMR in about 9 months, if I remember exactly, because I was having muscle and bone pain, if this Dr will not listen to you and your complaints I would change Drs.  my opinion. 

[tazdad08]

I wish you the best of luck with this. I am only taking one 200mg pill per day. when I asked my dr about doing this, his opinion was "there is no medical evidence that 200mg will maintain you". He was completely against it. He is a great CML expert... He has been involved in a few trials. I do respect his knowledge, but he is not as interested in my the side effects as I am. I done it without his knowledge for 8 months. I did tell the nurse practitioner what I was doing. She and I go to church together so we had an immediate bond. After 8 months on 1 pill a day she told the dr what I had been doing and for how long. He said that I was doing my own clinical trial. He did say to remain on this dose as long as my counts stay in line. I know that some have said that they didn't think the hair loss was enough reason to change TKI's, but I think that quality of life is very important. We are similar in ways of age and having young kids. I would either switch or lower my dose with my drs knowledge of what u are doing and why. Not all cancer patients have to loose their hair. And I am sure that it is more devastating to a female than a male. I agree that a 100 pound women shouldn't have to take the same dose as a 210 pound man. I understand that everybody responds differently and that weight is not always a factor, but if you responded good and quick then it seems that they could back down to try to minimize the side effects. I know that I am struggling with severe neck and back issues that were never there before. I am trying some pretty invasive steps to offset the pain. Do what your heart says, but be cautious... we have to try to stick around to raise the little ones.

[tazdad08]

You may also ask if there is a practitioner at your drs office. they seem to be less rushed and more compassionate. especially if its another woman.

[GerryL]

I dropped to 300mg Gleevec after I had a year of PCRU. It was with my docs approval, but I had had to suggest it to him a couple of times before he came round. Some people are a bit more sensitive to the TKIs, I have a friend who is on 200mg Gleevec due to side effects and maintaining her PCRU.

What milestone have you reached?

[Frogiegirl]

Hi GerryL so far I have hit CCR as of feb 3rd 2014. I just feel the dose is to high for me. I am super sensitive to all meds and including alcohol. I never take the full dose of pretty much everything because of this. I was just diagnosed in oct 2013 so I've been on tasigna for about 5months. I know it sounds soon, but I'm 5'10" 121lbs. I just feel like its overkill.

[Trey]

Since you attained CCyR in about 4 months it could be possible to lower the dosage at some point.  You want to do it for side effects, and that is reasonable.  But it would be better to wait at least until MMR is achieved.  I reduced dosage after PCRU for 3 years, and I think longer term reduced dosage is a reasonable approach. 

[GerryL]

I agree with Trey, MMR is a better place to be when looking to reduce your dosage. Are you due for another test in 3 months, it could be that you'll have reached MMR and be able to look at reducing then. I know that might seem a long way off for you, but one of the things I found that helped me deal with things is to feel like I have a plan in place and I only needed to hang in there for a bit to get there.

[tazdad08]

When is your next appointment? I am curious as to what your dr says if you decide to talk to him/her

[Frogiegirl]

I have an appointment on April 28th but I have no idea how to bring it up to my doctor.I think I may have to just try it on my own. Ill tell them I'm doing it but honestly I don't need there approval. I despise the team I'm receiving treatment from. I like my doctor and hate his nurses. I always feel like I am putting them out if I ask anything. I'm just to my breaking point, I stand by what I said and think its total overkill. I look like raggedy Anne stringy thin hair and all

[LLawrence]

Frogiegirl,

A one-liner of background on me.  Those who know me in my day to day life view me as someone who will not hesitate to voice what I feel to be hard truths, but with compassion.  I say that to soften what I am going to say in print, because it may come across as blunt (not what I intend).

Summary: You are early in your treatment.  Your leukemia is responding well to treatment.  You are having side effects of treatment that trouble you greatly (hair loss, weight loss) and feel that this is due to your dosage being high for your size/metabolism.  It seems that you are considering independently changing your treatment plan because you do not trust the treatment team (primarily the nurses).

Response: You are dealing with leukemia.  I realize that you know this, but there are risks with altering your treatment plan. During my more whiney moments, I take a look at the AML board (very sobering).  However, your experience is yours alone and quality of life is hugely important to all of us.  It is the balance that is key and elusive.  Your risks can be mitigated if you include your treatment team in your decision making process.  At my follow up visits, there are times that I only give my list of meds to the nurses, leaving the rest of the visit for the doc.  What I want is the doctor's input.  If I like/trust the nurse, I may give the whole story to them. Bottom line, I view the nurses as part of the team, but if I don't trust a particular nurse (fortunately rare for me) I don't let that alter my interaction with the doctor.  In addition, I have my doc's email address so that I can send a "heads up" note if something major needs to be discussed at an appointment.  If you continue to have problems with the treatment team, talk to your primary CML provider.  If you don't get resolution, you may have to have a change.  Over time, you should trust these folks to listen to you and take your feelings into consideration as you plan treatment (it doesn't mean that you always get your way....I haven't).  I have had to have alterations in my treatment plan to deal with side effects, so I get it.  Your team should be able to help you with this while minimizing the risk to you. 

Good luck.

Leesa

[tazdad08]

I know that either decision is hard. The drs seem to look at it more as a sprint. I like to take some things more like a marathon. TKI's are not going to cure us. We are in it for the long haul. I do not want to progress to AML, but knowing that we are not going to be cured, I would rather take the less invasive, less life changing, slower route.....as long as I am being monitored closely to know that I am not getting worse. I know that there is limited information about TKI's. I dont know if there is a larger chance of the PH+ chromosome becoming immune to the drugs at a lower dose....?????. But I have been on a lower dose for 9 months now, and thank God...It is still working. I do understand, and have taken some drastic, invasive measures to cure or help certain things, but when I went that route, I had the outlook that the ailment would be cured or drastically reduced as a benefit to the short term suffering. It is hard to find a positive outlook when you focus on long term suffering of things that you are uncomfortable with. ALL CANCER FIGHTERS ARE PRETTY....WITH OR WITHOUT HAIR. THE BALD HEAD IS A TROPHY... but I also understand not wanting to win that trophy if there are other rewards out there.

[0vercast]

It saddens me that you're having such a hard time with the TKI, but don't ever lie to your healthcare providers. They need accurate information to accurately diagnose and treat you.

Be honest with them, and tell them that you're miserable and you cannot handle the side effects of Tasigna, at least not at the current dosage. Don't expect a final answer on the spot. Let them do some research and possibly consult some colleagues as to what should be done. At this point, since you're relatively early in your treatment, I believe it's more likely that you'd switch TKIs rather than go with a reduced dose of your current TKI.

Also, don't forget you can always switch Oncologists or have consultations with a CML specialists. I know of people that have a primary Onc. and occasionally see a CML specialist on the side to get a second opinion.

I had a very subpar response to Gleevec (my first TKI) and I was considering driving 4 hours to the Mayo Clinic to see a CML specialist every so often to see how they felt about my sticking with the drug. I told my doctor about this plan, but voiced that I wasn't thrilled about having to drive half-way across the state to get cancer treatment when I live 5 minutes away from a massive cancer center that attracts people from hundred of miles away. So he consulted with the CML specialists himself, informed me thoroughly, and showed me the correspondences. These docs are here to help you.

Lastly, if you have nurses that you do not like/trust, tell that to the doctor, and be prepared to give details about why you don't like or trust them.

HTH, Joe

[0vercast]

Have you tried any dietary changes to help keep the weight on?

My weight crashed during the 3 months leading up to CML diagnosis and continued to drop for a half-year after that. Feeling rather miserable about my newfound predicament at age 29, I raised my spirits with some rich, fatty, and sweet foods for the initial periods of CML treatment.

For example, a big, fat, juicy burger with extra cheese and mayo. Or a milk shake for a treat, made with with vanilla ice cream, heavy cream, and a spoonful of peanut butter and fudge. Sometimes just a spoonful of peanut butter as a treat. Or a half-cup of roasted nuts once in a while. Extra olive oil added to foods. A 2 oz. hunk of cheddar cheese. Rotisserie chicken. Shrimp with roasted garlic butter. Pork chops with the fat left untrimmed prior to cooking. Stuff like that...

Increasing the fat and calories I consumed certainly helped curb the weight loss, and the indulgences made me feel better. I wouldn't recommend an artery-busting diet over the long run, but the weight-crashing period will almost certainly end soon for you, and when it levels out and you begin to gain a few pounds, ease off the high-fat/high-calorie diet once you reach a desirable target weight.

[hannibellemo]

Hi, Jimmie,

I've read this a couple of times recently and I wanted to point out that we have CML. We may progress to accelerated or blast crisis but we do not progress to AML or ALL. We continue to have CML it is just that in CML blast crisis, cells act more like AML or, less frequently, ALL. Although the cells may act like AML they do not respond to current treatments. They may respond for a time to the drugs used to treat ALL.

I've attached a link to the ACS that explains this in more detail.  http://www.cancer.or...eating-by-phase

Hi, Frogiegirl,

I know it can be very difficult to summon the courage to talk to your doctor about your treatment and how you would like to change it. But, it is important to do that, after all, just like you want to feel you can trust them - they need to feel they can trust you. Going behind their backs and changing your treatment for this very serious disease is not very trust enhancing. Do your research and present your findings. If you decide to do this, let them know. They may decide they no longer want to treat you, on the other hand, you can always fire them and find someone else more willing to listen to your concerns.

Good luck!

Pat

[tazdad08]

Thanks Pat.. It looks like I need to get rid of that chemo fog and re-educate myself. For some reason I was thinking that CML could progress to AML.. ooops. I still strongly agree that the dr needs to help frogiegirl with the side effects.. one way or another. The disease is bad enough to deal with without so much suffering from the side effects

[August1]

Hi, Frogiegirl,
I'd talk with your oncologist directly rather than modify your treatment on your own. You're making great progress and it's not worth it to jeopardize that. You need to keep your intake at therapeutic levels or you increase your risk. Plus you should have other drug options (I would think) although it would be tough to change from something that seems to be working for you. In either case, your doctor needs to listen to you.

Also, I lost a ton of weight at one point during my treatment. I think it may have had to do with absorption. Now I've gained it all back, and then some. Just in time for Spring. Nothing saying any of this is permanent.

Take care,

Bill

[GerryL]

Darn it is only just after 9.00am here in Aus, but gee I could go a burger after reading your comments Joe.

[jjg]

Hi Frogie, I'm almost exactly the same height and weight as you. Although I might add that I prefer to think of myself as athletic rather than "raggedy" but then this is my normal weight. In the last 3+ years I've been on gleevec, interferon and tasigna. Only the interferon dose was based on weight and that was the hardest drug. I started on 600mg of gleevec which is considered a higher starting dose (mostly people start at either 400 or 600). I also wondered if I needed that much and had the plasma levels of the drug tested and guess what - despite being at the lighter end and taking a higher dose the levels of the drug were slightly lower than average. It's my understanding that there are quite a few things that determine how much of the TKIs you actually absorb and while size might be one of them it is not one of the dominant ones - hence they don't determine dose by weight. If you respond really well or have horrible side effects (grade 3 or 4) then you can, or in the case of side effects may have to, look at reducing dose.

Each of the 4 times I started a new drug or increased the dose I lost a lot of hair such that 6 months after starting tasigna I'd lost 2/3s of my hair. Two things on this - nobody other than my husband ever seemed to notice/care (granted I work with engineers) and at some point it will start to grow back. It will probably never be as thick as it was but chances are it will improve. Btw my husband took to renaming my ponytail as "ratty" - short for rat's tail. Now it's thickening up he calls it "fatty" or "fat tail". I've had other more obvious changes to the way I look - very sucken eyes and significant skin issues. It all sucks but inside I'm the same person.

Wrt weight - there are some good pointers already in the replies. On tasigna I find that I sometimes lack motivation to eat although this is nothing compared to what happened on interferon. So I have had to watch my weight. Unless you are suffering a lot of nausea, vomiting etc you have the ability to address the weight issue. It might be easy to look to your doc to solve this problem but they are used to seeing people that are in much more trouble with their weight than we are - they might say it nicely, but basically they are just going to tell you to eat more. I find it easy to eat more after gentle exercise - make sure that when you are hungry you take full advantage.

It seems that most of us find the first 6 months the hardest. I'd have to say that if you get to 6 months of treatment with the problems you describe, then you have done well. That's not to say life is as we would all like. We understand how disappointed you are.

[GerryL]

Well said Josey. I remember the photos of the changes to your eyes, it was particularly noticeable when we saw the pictures.