Hello friends
I was diagnosed with CML -CP in Feb 2018,and I was put on imatinib, after six months my BCR-ABL level were 23% and I was switched to tasigna..three months later in Dec Feb I developed swollen lymph nodes, biopsy of which confirmed t-cell lymphoblastic crisis.Now am admitted in a hospital for extensive chemo and later BMT. I am on medication dasantinib currently.i don't know where I will finally land?
But I certainly observed few misdiagnosis during my treatment.
1. Doctors usually treat you as patient who is going to remain in Chronic mode for lifetime..and they will never took your observations seriously(in my case).
They never thought that I could in remaining 10% who advances to blast crisis.
2.Every change in body and lifestyle is important from day _1 of diagnosis.
3. Normal blood reports are biggest liars in CML, they will just soothe your comfort level. Other regular tests at weekly or bimonthly interval are must,at least for one year.
4.Doctors will never tell you what to eat and not to eat..like maintaing vitamin D ,curacumin tablets.
4.Observe your body carefully for any nodes and other changes.
I trapped in this long battle for still unknown reasons.
Suggestions for my future treatment path appreciated.This forum help me lot ,i still awaits for replies and hope from members..
Kindly reply
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Blast crisis
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PC, may I ask where you are being treated? I am new to CML and not as educated as much as I should be about CML but working on it, but my jaw dropped when I read your post.
Stephanie
Hello, I read your post with interest. I would also like to know where you are being treated? I was diagnosed in March 2018 but after 6 months on Imatinib, my Bcr_abl was 70%. I have been taking nilotinib for 7 weeks now, and my general blood counts have remained "stable". I have yet to be told my latest Bcr_abl result so I have no idea if there has been any improvement. I am feeling very low in mood, with tiredness, aching limbs and joints plus dreadful itching.
Your post was alarming (to say the least). It has prompted me to ask more questions and clarification of my situation. I hope you are progressing well.
PC
Dasatinib is a very potent drug so it may bring your CML to chronic phase. I wish you all the best please keep us updated
I have one question you mentioned that other test (weekly or bimonthly) are a must. What kind of tests are you referring to ?
So sorry to hear of your escalation. I do agree, that in the early Chronic phase they sometimes take it for granted. I was misdiagnosed at the beginning and told I had AML. When I met with the oncologist 4 days later, after much preparation for the rough road ahead was told I had CML.
Thank God for this site. This site has educated me, gave me power, which has led to many questions. I've went from my VA Dr to a Wellness Dr. He did complete exam and a 19 page questionnaire. Will complete his blood work required Jan 3. Then back for a plan. The VA will continue oncology. I take Imatinib and it does rob our body of key nutrients.
I pray the stronger TKI will help. And your included in my prayers God Bless YOU Ray
I was released from hospital after three round of chemo.. and swollen lymph nodes reduced to normal in size but blood counts are quite below normal range..more bone marrow biopsy are followed after 4th chemo and consequently later course of treatment will be decided..
PC - I came across this case study which seems to mirror your own situation.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4316902/
Blast crisis is very serious as you know. What you could consider along with whatever your doctors are doing is to increase your blood vitamin D level. I suspect your current vitamin D level is low. There is good evidence that vitamin D causes blast cells, even leukemic ones to differentiate. This is key in reversing blast burden. Vitamin D is vital for immune system activation as well as blood cell differentiation. It's role in disease management is in debate, however.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3725501/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2820234/
https://www.cell.com/cell-reports/fulltext/S2211-1247(16)31217-7?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2211124716312177%3Fshowall%3Dtrue
Although the first article above is somewhat specific to AML - blast cells are at the top of the hierarchy and common to many blood diseases. There is a chance that increasing your vitamin D level could help you.
In my own case, at diagnosis my blast count was high - one doctor thought I was in accelerated phase. My blast counts remained high (although dropping) during initial TKI treatment until I started a vitamin D protocol. Within weeks my blast count reduced to zero and has remained that way ever since. I learned that my vitamin D level was 17 ng/ml (very low). I now maintain my blood vitamin D level around 70 ng/ml by taking vitamin D3 supplements. Show your doctor the above paper and suggest you have your vitamin D level tested and assuming low - have it raised to help with whatever they are doing for you. You do not want to over supplement with vitamin D and I take vitamin K2 with vitamin D as they work together in the body.
There is no guarantee on any of this - just something to try as you navigate this journey. All the best.
Hi Justine Sorry for the delay in answering. My blood draw was 2 Jan 2019, I will have results next week. I have 3 Dr appointments next week. FUN one, get to see my newest grand child's ultra sound. I also have Oncologist and also Wellness Dr. I will post results on all under my BCR ABL forum along with the answers of questions for Oncologist. Also will post blood results of blood work for Wellness Dr. Scuba was really instrumental in me wanting to have the most complete blood draw I've ever had in my life.
I'm doing very well. Just not the energy I'd really like to have. The imatinib is part of the problem, and we'll see if there's something else.
Thank you
Ray
I am very sorry to hear about this and my thoughts are with you. I had a friend who went to blast and then failed a BMT so I feel for you l. First, thank you for your tips and I totally agree with them.
I was diagnosed 2 month after you in April and I can’t agree more with what you said on lifestyle changes and frequent monitoring. We should not delude ourselves by ignoring signs that contradict our belief that things will he ok. ( confirmation bias).
In my friend’s case, they switch her to Tasigna way too late...those response guidelines are just as guides and I think docs should be much more proactive in monitoring and changing therapies.
I have done some research on this and I think there are a few aggressive options on the table. Please see the link below. I would start investigating Venetoclax immediately. It have shown to work in AML and my doc have used the word cure and miraculous when he talk about this drug. It have relatively low toxicity and side effect profile is understood. You are in india so there is not much stopping from getting on it.
http://www.bloodjournal.org/content/128/22/5428?sso-checked=true
https://www.nature.com/articles/bcj201530
I would go Vegan and stop any meat and diary consumption since it drive CML
http://cancerdiscovery.aacrjournals.org/content/7/7/OF18
I would start taking watercress and broccoli sprouts
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585768/
Lots of Vitamin D as per Scuba of course.
Usually, I won’t dare to make these recommendations since I am not a doc and don’t want to play one...but I think you have nothing to lose here to try every option available to you . Anyway, best of luck and keep us posted!
P.s. I would like to know what you think could have contributed to your progression? Is it lifestyle, stress?