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Hello - my diagnosis was April 2017, so not very long ago. I'm having good success with imatinib, not much in the way of side effects except fatigue. But it is very strange to have cancer and no symptoms. Does anyone else feel this way? It is just surreal to need to take a pill every day, and see the doctor and have blood tests so frequently, when generally speaking I feel fine! On Saturday I skipped a dose, as a way of protesting or something. I felt guilty the next day and got right back on track, but I am having a hard time shaking the feeling of being an imposter! How can it be true that I have cancer and will have it for the rest of my life (I am 54), but I don't feel sick? (My eyes are always bloodshot and puffy, but that is the only thing.) If anyone else is experiencing this kind of denial or whatever, I would be relieved to know. ... Maybe I should just count myself lucky to have few side effects or symptoms, and try to forget about it! (Except the pill and the doctor!) Thanks. 

It is very strange indeed.

When first diagnosed I was quite anemic, so I had a number of transfusion, until my bone marrow recovered.
Apart from that, from a purely physical point of view, I was feeling all right.
Yet I was in a room with people who were getting chemo for other blood ailments (other leukemias, lymphomas, etc). They were smiling and joking, and I really felt like an imposter. I mean, they were getting the hard treatment, nausea, hair loss and all the nasty consequences of chemo, while I was (hopefully) getting away with a pill and some minor headaches and skin rush...

Honestly, getting CML in 2016, I find it hard to use the jargon of cancer: words like struggle, survivor, etc.
This because they are quite scary, and luckily I did not get to see the nastiest sides of cancer treatment.
But also because I feel it would be unfair to those people who really struggled, much harder than I did.

Than, from a psychological point of view, it's a whole different story. When I was sent to the hematological ward I believed I had a few months left. And then, until my myelofibrosis started healing and I git the first PCR results, I was really frightened by the possibility that TKI would not work.

Now, after more than a year, it is better.

But still I find it hard to equate my experience with cancer or, even worse, leukemia.

 

I agree, it is strange.  

Even after nearly eight years, I still feel a bit of a fraud at times.  I am lucky enough to never have felt ill at all - apart from the side effects of imatinib - and people who don't know me well would never suspect anything.  Even those who know me better sometimes think that I have been cured and are surprised that I still have to take pills every day.  We are so fortunate to be alive now, things were so different just a generation ago.

Thanks, Dave and Olivia. I needed that validation! Sometimes I wish I had not told anyone about my diagnosis, except immediate family and closest friends. It was such a shocking diagnosis that I felt I should tell my boss, a few coworkers, etc., and now I think that was a mistake. Oh well, live and learn, right? Maybe it's best for us not to think about this being cancer, but rather a gift that briefly gives us insight into what it feels like to have a chronic disease, and then a magic wand that waves it away. It's really incredible, isn't it? Thank you and all the best to you. Justine

HI All,

I don't wish to frighten anyone or bring anyone down but believe me CML is a cancer and a pretty vicious disease if left untreated. Since the advent of TKI therapy in 2000, for a majority in chronic phase, the prognosis is very good. However, for fairly complex reasons, there are some people who do not fare too well on TKI therapy and will need more intensive treatment - e.g.stem cell transplant - which involves chemotherapy and all the trimmings, which is pretty hard to tolerate.

So, please don't be hard on yourselves. We have CML at the right moment in time, which means we are fortunate to have effective targetted therapies. Compared to other cancers, CML is a fairly easy one to understand.... i.e how, rather than why, it happens genetically with the translocation of parts of chromosomes 9 and 22 (the Philadelphia Chromosome) going on to form the abnormal 'fusion gene' BCR-ABL1.  This is why Dr. Brian Druker and others were able to design an inhibitor to block the cell signalling that results in the PH+ cells proliferating. Their goal was to find a molecule that was available orally rather than by IV.... so imagine if they hadn't bothered and we were all attending daily/weekly IV sessions. That probably would not have happened due to the costs and we would all be desperately trying to find HLA matched donors.

I don't feel lucky for being diagnosed with a leukaemia (blood cancer) but I do feel very fortunate in having access to the best possible therapies- and that includes the stem cell transplant that I underwent in combinations with imatinib (with a successful outcome) back in 2003. Cancer is a difficult word to come to terms with, I think because it represents so many different diseases that are much more complex and most of those do not have effective therapies that produce good long term outcomes. Hopefully, one day that may change.

Sandy

Hi all,

After having read enough of trial papers and medical journals in my initial quest to understand CML, i must concur with Sandy's words of warning about this silent yet deadly leukemia.

CML truly is a serious and malicious disease to have, even in this TKIs era. Echoing what Sandy has said, from a prognostic standpoint, i felt fortunate that it was CML that i was diagnosed with, and not other form of leukemias in terms of treatment options, thanks to the advancement of precision medicine and targeted therapies. But never once did i feel lucky to have this cancer.

I do not wish to alarm or depress anyone in this forum in any way, but there are numerous trial and prospective studies which stated that despite the application of a tyrosine kinase inhibitor (regardless of its class generation), progression to later stages of the disease (i.e. accelerated or blast crisis) can and do occur due to either primary or secondary resistance to an TKI. And note that this is in addition to the ongoing severe toxicity and adverse side effects that some CMLers were forced to live with every day. The studies have implicated that one affirmative factor triggering the progression in CML to its fatal stages was caused by secondary resistance to an TKI that strongly correlated with patients' complacency and lack of adherence to their TKI regimen.

With CML being likened to Type 1 diabetes in terms of treatment and management, it is so easy to forget at times that it is a real cancer. But it is nonetheless a deadly malignancy to have and be mindful of its presence by being adherence to our TKI regimen can keep us one step ahead of its pace in our race towards a systematic cure (aka complete molecular response or lower and maintaining it) - which is still our best wild card to keep in check for better chance of progression-free and overall survival apart from getting a BMT.

Best Regards,

Ellie.

Yes Justine, you are certainly not alone in feeling this way, I also do. And even though I have now lifelong eye issues due to my high blood counts, I still feel like I got away easy. Maybe thats the key, lets continue to feel lucky not like faking. 

And of course Sandy is right...let the others in our life forget its serious but we mustn't

Thank you all. It is so nice to have this forum. I look at it every day! Justine

Frankly, I don't know how to feel.  I agree with all of you.  For the most part, I feel almost normal but I struggle with the puffiness around my eyes that seems so severe people I haven't seen in only a small while don't even recognize me.  I am on dasatinib and responding well & nearing molecular remission, yet I experience bone pain, mild headaches, bloating, and really bad fatigue.  Once in a while I get rashes, eye bleeds, and I have to go to the bathroom a million times a day.  My life has changed quite a bit as I have not worked and I dread going back to my retail sales job that will have me on my feet for 8 hours a day.  I sit & rest often.  And yes, I too have deliberately missed a dosage as some kind of protest.  I'm confused about this pill...why am I "protesting"?  Shouldn't I be grateful?  I am and I'm not.  Am I sick or am I not?  If I no longer have my benefits from this job, how will I pay for these pills?  I don't relate to the term "survivor" & most times I don't see myself as a cancer patient either....and when I do, I feel like a fake.  What it is, is that I'm worried and anxious about the future.  What will I do for work?  How do I support this illness when insurance companies will no longer cover me?  I'm just ranting to anyone who will listen.  I've been silent about it but since my time is coming up to return to work or whatever work I end up with.  What it comes down to is that I am having anxiety about my life.  All I keep saying is that I must have faith that everything will work out.

Hi, Joaniebones - I just saw this because I just joined this discussion forum.  I am on dasatinib, too.  I went through everything you are talking about, although it was on imatinib 400 mg, when I started in 2009.  I won't go into the details of those woeful times, but I certainly shared your experience.  And I would say that, as miserable as I felt physically, the emotional side of it was worse.  At that time I had no discussion forum and an oncologist who kept smiling and saying, "most people tolerate the drugs very well," which made me feel even more alone.  Anyway, you didn't say how long it's been since your diagnosis, or how much dasatinib you're on or how your PCR is coming along.  To cut to the chase, I'll tell you what helped me pull out of those dark days:  I started (psycho)therapy with someone familiar with cancer issues, I changed oncologists to one of the leading CML experts, I found the old (and now defunct) LLS discussion board, and I switched drugs.  For me, dasatinib helped tremendously with the depression and anxiety and malaise (especially the malaise).  Fatigue and periorbital edema (the eyes) were much, much better.  However, you're having these problems on dasatinib, so I wonder if you could reduce dose.  I believe there is accumulating feeling that the usual dose - 100 mg - is too high for some people.  Particularly if you've reached MMR or lower, I would think a reduction for intolerable side effects could be justified.  I still, to this day, have never met another CML patient!  All my pals were on the discussion forum, and oh, how we needed each other!  The education we offered each other was invaluable.  So, it's good you're here, on this excellent site.

You're so right about feeling in between sick and well with CML.   Please don't feel you "should" feel grateful.  CMLers totally understand that!  I even sometimes mused about the advantages of other cancers, because yeah, you lost your hair but it grew back - you were done with your chemo and could get back to living.  But this?  Taking a pill that afflicts you more than the CML does, day after day, for the rest of your life?  Believe me, some of us have definitely occasionally wondered if it were worth it.  It also really doesn't help when even the docs don't acknowledge stuff like fatigue.  I've come to the conclusion that nobody really understands except another CML patient that, you can be fine in the morning and make plans and have energy, and then boom, at 3 PM suddenly the wind is dumped from your sails, completely.  Heavy legs.  Or, two great days followed by a crash.  Not being able to commit to a future plan is discouraging and demoralizing.  It robs you of hope, it saps your joy.  I think this is where the therapist can help.  And time.  I got better over time.  And a nice descending PCR always helps. 

I don't know about you, but I always needed to know WHY things were happening to me.  Just calling it a side effect didn't help.  For instance, the extreme paleness (cadaver-like, if you ask me!) that most of us have I found out was because of off-target kinase inhibition in the melanocytes - the cells that create pigment in your skin.  I forget whether it's the PDGFR or SRC family of kinases, whatever.  But it helped to know I wasn't crazy, you know?  That's the stuff I found from the old discussion group and research papers.

Anyway, hope this helps.  I just looked at the time - it's 1:30 PM in the States, and I have . . . a therapy appointment!  My best wishes to you,

kat

 

Joanie 

My husband has been on 100 mg Dasatinib since Oct. Doing well but also started to get puffy itchy eyes last month. I checked in with Scuba who has just joined this site ,after moving over from US one, and my husband has started taking extra strength Turmeric with Curcumin. Costco seems it here) .It helps with the inflammation and he has def seen a big improvement in the last week. I checked with his oncologist today and he said it was a good idea. Hope it will also help with the voice hoarseness and hearing loss he has occasionally experienced. 

i would also see if it’s possible to try a dosage reduction. Scuba is doing well on 20 mg:) 

 

best wishes Louise 

Hi Kat.

I just wanted to come along and echo some of your thoughts. I think your post is very good!

I was on a rollercoaster when I was first diagnosed, long story short I ploughed through the first 3 months with a few side effects but feeling quite well and things would improve, my wife was pregnant and I didn't want anything I throwing that ofcourse. Fast forward 5 year and I have had quite a hard time.

I have been quite misfortunate to be intolerant to nearly all TKI's for muscle pain and bone pain. I am in a small group granted, but we do exist. I was a fully fit Firefighter but I have had to give up the operational side and move to a more sedentary role, this has been emotionally hard in itself. I am trying to pull myself together but a transplant has been suggested if things get so bad as a purely speculative fix.

My point is, we all respond differently, some tolerate TKI's extremely well, some have bumps in the road. My road has been riddled with pot holes and life has never been the same or even close to how I was. I certainly don't feel *that* fortunate. I appreciate I have life, and it was much worse for the poor folk before me.

As Sandy and many others have said on this forum this is a very serious illness. It is an unconventional cancer with quite unconventional treatment.

Colds and flu's knock me for six, so I try to be vigilant with who I am around best I can, without being over the top and wrapping myself in bubble wrap.

Best of luck with your individual journeys everyone. Be kind to yourselves.

Anyone out there in the minority and struggling, you're not alone!

John

John - Thanks for your compliment.

No one should have to settle for the misery you describe.  Although there may be no "fix" (although there could be), there has got to be some help.  You have had a real blow to your self-image and that messes with your mental outlook.  It's hard to get your bearings and look to the future as if it could be different, because you feel you have no control over what is happening to you.  Are you seeing a CML specialist?  They have more CML patients and have seen and heard from the "minority" sufferers like you before and can figure something out for you.  And don't discount therapy (do I sound like a broken record?) because that is a safe place for unburdening yourself completely, with no worries over upsetting a spouse, and they can offer a lot in the area of coping skills.  Also validation, which means the world to us.  You say you've been intolerant to most of the TKIs - which one(s) haven't you tried?  Could be the magic one!  I wish I could comment more specifically and helpfully, but number one, I'm only a fellow patient, and two, although I have had some side effects and adverse events (like pleural effusions), I've never experienced the bone and muscle pain or cramps.  I hope some folks will come to your aid here and suggest what has helped them.  Bottom line, don't settle.  Rouse yourself and demand a better life!

Hi.

Thanks for your input and opinion.

I have tried Imatinib, then Nilotinib, then Dasatinib (Worst for me), finally I am now on Bosutinib.

We have agreed to see things out as I have seen minor improvements over a stable TKI path. I am hoping for more as the disease load is controlled over a sustained period of time, currently that is 18 month on Bosutinib. Before I was switched within 6 month or less to different permutations.

I see a good consultant and indeed a specialist, who is honest and open, but he is limited to tools in the box as he describes. I have seen some of the top specialists in the UK and spoke to some in the US. The more people you ask, the more opinion you get. I am in a better place at present than my lowest in 2016 where I, and others, thought Transplant was going to be the only option.

I will continue to try and make gains to negate the transplant option.

We are in new territory with TKI's with only a decade or so of data. I believe I am in a minority with my problems, but there is a minority out there and I don't want them to feel alone. We are blessed with this form of Therapy, but it is a long haul, a condition to manage. The interesting thing is some (most) feel side effects decrease over the 3 month stage, some seem to reactions later on, fatigue seems the most common. We are all different and will have different journeys.

Verbalising your thoughts can be beneficial for some. I think it must be so hard for those around us. Hiding it from our children etc.

I hope you have more good days than bad and wish you all the very best in your journey.

hi my name is Steven I was diagnosed in February 2020 

it’s been rough 

tried sprycel for about 4-5 months then it caused fluid around my heart and lungs I had to have it drained   OMG between that and the Bone marrow biopsy wow pain 

I am now on gleevic and it’s causing me to have nauseous diarrhea blah no appetite very emotional out of no where very hormonal 

I have a port in my chest now because my veins are shot from the first TKI 

I hope you are doing well