Need support from my support group

Hi Rocky Mountain Gal

Sorry to hear that the numbers aren't moving downwards as hoped!  I know what this feels like as I didn't meet any of the milestones required by the CML experts and I felt quite powerless and frustrated.  But there are other treatments to try and I'm quite sure the specialist may be of help.  I actually would perhaps favour a "younger" doctor who did her training in the TKI era, as opposed to those who qualified when CML was only treatable by a bone marrow transplant as they might be more up to date with current treatments.

My CML journey has also been complicated and I've twice been at a point where I thought I was losing this battle because of my unusual situation.  My advice would be, first of all, not to panic as there are many options.  There are other TKIs that may work better than the dasatinib as they target different areas - this new asciminib is not even a TKI, but works in a completely different way and may well work for you.  I might be put on it soon myself. 

Have you had a mutation test?  There are many possible mutations and some drugs work well against one and not at all against others; so it may well be that you have a type of CML that is resistant to dasatinib in some way.  Below is a quote from an article I read that shows the efficacy of different drugs against different mutations, and it shows that there are some that are resistant to dasatinib but sensitive to nilotinib, for example.   

"In vitro data and clinical trials, however, suggest that mutations affecting three residues, E255K/V, Y253H and F359C/V, are less sensitive to nilotinib, whereas V299L, F317L, E255K/V and Q252H appear to be less sensitive to dasatinib. If patients have one of these mutations, they should be treated with the drug that is known to be active against the specific mutation."  (from an article by G Saglio (2012): Second-generation TKIs: which and when?)

Second, I'd advise you to do some reading and research yourself but ONLY if you are the kind of person who wants to read and learn more, because there is some negative research out there too.  In both of my "events" during my CML journey, I found obscure bits of research that helped my doctor better understand my situation.  The first study showed that only 9 other people in the world had experienced my unique brand of side effect, and I escaped treatment for lymphoma after showing my doctor this article!  I've found that we have to be our own best advocates.

I will keep you in my thoughts and prayers, and try to send as many positive vibes from this bottom tip of Africa your way as I possibly can!  When I went through a serious crisis last month, I so appreciated all the thoughts and prayers and comments from this community - please let us know how you get on so that we can continue to support where possible.  These drugs work so effectively for so many that we are often the exception, but there are ways to fight and bring this disease under control!

Best wishes 

Martin

Hello Rocky Mountail Gal.  I am not sure if you have mentioned this in the past, but were you tested for mutations or clonal evolution?  That would be an important first step for your team to decide the best options for you.  Nilotinib approaches the disease different than does Sprycel so that would be an option.  Also Asciminib (not sure how to spell it) has shown promise for people who have not had success with Sprycel and Nilotinib.  Try to stay positive while at the same time pressing your team to make the educated next steps.  Praying for you and don't lose hope as you have literally only tried one TKI out of around 6 of them.  

*Update*

I met with the specialist today.  She has scheduled me for a bone marrow biopsy on Monday.  She said it will show mutations that a blood test won't.  After that comes back we will decide which tki would work best for me. It's possible that it will come back with nothing, but more information is better.  Not looking forward to the bmb, but recognize the necessity of it.  My hip hurts just thinking about it.  She is very laid back in her approach, and said the same thing that you all are saying, we have other tki's to try before anything drastic.  She is also just a few days out from a maternity leave, so looks like I will be seeing my original doctor as well.  I hinted about switching local doctors and she gave me the impression that I have the best of the group.  {sigh}

Bottom line, she gave me assurance that my case is being handled by more than one doctor.

p.s. Martin, thanks for the pm.  It DID help, tremendously!

Hi again

I think this is good news - the BMB isn't great but is still the only definitive way of finding out what's going on in the marrow.  I've got no doubt they will get to the bottom of this and get you the best TKI for your situation.  Crossing fingers!

Best wishes

Martin

Hi Rocky Mountain Gal

Was just interested to know whether you've had the BMB and whether there is any news?  We're all crossing fingers and hoping the test reveals the next steps!  But probably early days since the BMB results take long.

Good luck and best wishes from South Africa.

Martin

Scuba, here in the UK the more painful type you mention is often called a “trephine”.

I must admit, though, that while neither are pleasant I’d prefer a trephine over a tooth extraction. During my second one the needle broke and they had to get a pliers out to remove it! 

David.

Martin, thank you so much for checking in!  Your kindness and concern blesses my heart.  I'm still waiting to get the official results.  I can see the test results online, but I don't know how to interpret them.  I have a drs. appt. next Tuesday.  One of the tests did say 'ABL1 Kinase Domain Mutations Not Detected' so yea!

David, please note the parameters of this post: only helpful and positive.

Hannibelleo, thank you for the empathy and reassurance.  It's helpful to know others have had a bumpy road of treatment, I don't feel so alone.  I also appreciate your shared knowledge.  My peeps here usually have more info than my doc.

Scuba, Your words of assurance are very comforting.  "I'll be fine."  I think I'll repeat that mantra to myself daily.  Other than an appendectomy a few years ago, I have been healthy all my life.  This whole 'chronic' thing has thrown me for a loop.  I don't really know 'how' to be sick.  I DON'T FEEL SICK!

I had both aspiration and biopsy.  The doctor had me laughing even before he gave me Versed.  I was really sore the day of the biopsy, so I took my last curcumin for inflammation, and a couple of doses of homeopathic and by the evening it was a mere memory.  And they finally did a FISH test. It confirmed that I have CML.

Why did you have one every 6 months?!?  I would like to know more of your story.  Seeing where you are now, from where you were gives me hope!

Thanks everyone, for the support!!!

Hi Rocky Mountain Gal,

Glad to learn that you don't have any mutations! I was diagnosed last December and I am on nilotinib for ten months now. In the first months I had side effects like fatigue, nausea and light numbness in legs. Close to April I had no side effects, the only thing that is tiring with nilotinib is the 3 hour fasting (two hours before the dose and one after) and of course you can't eat grapefruit.
The first BCR-ABL in February was 0.18, My doctor told me that the "target" was to achieve MMR after 6 months. The second PCR after a month was already MMR 0.022 and the result in June was 0.002. Next week I am waiting for the results of my last PCR I had in September.
It seems that nilotinib works great for me, doctor told me that I am "lucky" that I tolerate well without side effects. As we diagnosed close, I hope that nilotinib will work well for you too and achieve soon MMR. Think positive and put some exercise in your daily routine!

This is almost comical. almost.  I called the doctors office today to follow up on my prescription change to nilotinib.  Oh, sorry, they say.  It didn't get ordered, they say. My appointment was TEN DAYS AGO!!!!  Yes, we know that sprycel isn't working for you, so we'll try to get on that today.

$#@&%(*!!!!!!

Oh Martin, 3 months?!?  Was that the process where you live or neglect of your team?  I really like my doctor, but I am so frustrated that my team has been negligent.  On the one hand, I am fortunate that my doctor is 5 minutes from my house.  On the other hand, they keep messing up, so that convenience comes at the price of my health, so maybe not the greatest.  I have looked for a 'specialist' in my area, and there isn't one to be found.  This is why I am constantly asking for help and advice on this forum.  I'm not even a year in, so still learning so much about this journey. You (and others) have been a great help and comfort, thank you all!