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Steroids to support bone marrow

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Hello,

I wonder if anyone has any experience they could share of taking steroids to support very low red blood count and very low platelets?

my husband was dx 7mths ago and started on imatanib but stopped after 4mths as it stopped working. Switched to dastanib but only on it for 2 weeks as platelets dropped, well all blood counts did. But they have failed to recover so he has been off medication for a number of weeks. 

2 bone marrow biopsy’s show no cancer progression (blasts are 0.6) and showing no other explanation as to why bone marrow not recovering. 

Consultant is now starting him on a course of steroids to stimulate the cells to develop and hopefully restarting him on Bosotinib next week.

Such worrying times so grateful to hear other experiences, if they are similar!

Hi! 

My situation mirrors your husbands one exactly. I am also 7 months in and struggling with low platelets and low neutrophils. My anemia is mild though and hovering between 10 and 12. 

I also took imatinib for the first 4 months.  I had a suboptimal response (16 % at 3 months and 11% at 4 months). I was then switched to nilotinib due to myelosuppression. But on the contrary to the expected my blood counts tanked and have not really come up since. I had a 3 week break at month 5 and my counts restored but then went down again when restarting medication. My blasts are also around 0,5 in my marrow which is fully normal for the marrow.

I can just share what our strategy is at the moment. My 6 month PCR showed and increase to 18 % (probably because being off the drug for a couple of weeks) so that had us pursuing a full dose nilotinib strategy while supporting my platelets with weekly transfusions and neutrophils with weekly growth factor injections. There are basically two strategies which are being employed by the medical community. One is stopping and starting and the second one is keeping the patient on a medication while providing supportive treatment. Both have their ups and downs but in the end it really comes to the consultants experience, nature of the disease and the patients own willingness to adhere to one or the another strategy. I voluntarily chose together with my haematologist the strategy being applied on me since it gives me more comfort. My platelets and neutrophils have stabilized on a low level and I am hoping to get off the supportive measures in a couple of weeks time. '

ps! You will find on this forum some debate whether growth factor shots are indicated for a myeloid cancer patient or not (since some evidence shows that it may stimulate the cancer). I had this discussion with my consultant as well and when the blast count is very low and the disease is starting to get under control, it has deemed to be safe. When blasts are in the blood and count is high, it may be a problem.

Steroids are a possibility but I have not been offered. Steroids can induce some other unwanted side effects but since their use is most likely for a short amount of time, it may be tolerable. Or there may not be any side effects at all!

As regards to bone marrow recovery in general, there is a lot of posts on this forum where experienced CML people explain the transition to a healthy marrow. Your CML clone is getting wiped out fast, myelosuppression is a sign of that. But your healthy cells need time to repopulate the marrow. Search on this forum with keywords as "neutropenia" or "low platelets". You will have a lot of useful information which fully aligns with the medical establishments opinion on myelosuppression. 

As a final note. I would reconsider switching for a third TKI. The chance of this happening with bosutinib is very high. It is the nature of the treatment and the TKI effect. You may be lucky and myelosuppression can back down but usually this is a thing which just needs to be endured. It will get better, it almost always has. You may have to get used to lower than normal counts for a very long period of time but I would suggest asking your consultant what is sufficient for a normal life. You would be surprised what the answer is. Neutrophil count of 0,5-0,7 and platelet count of 20-30 is sufficient for a cautious life (means avoiding injuries and infections) and neutrophils of 1,0 and platelets of 50-60 is not even a concern, according to my consultants. But of course, if the cytopenias can not be resolved, a switch would be in order. I am not a doctor by all means, it is just my personal opinion which was also supported by my consultant. Dasatinib is a very good and potent drug! Also, if I am not mistaken, if there are no other side affects which your husband could feel then myelosuppression alone is not a very common reason for a switch. In my personal case, it was the combination of myelosuppression, borderline optimal/suboptimal response and one other factor I will not bore you with describing:)

How is your husband PCR results?

Stay safe

Timo

 

Hi! Thanks so much for taking time to send such a detailed reply. It’s really helpful!

It is likely my husband will restart TKI therapy next week given the amount of time he has now been off medication - his white cell count has started to increase and whilst we’re waiting for a PCR result it will no doubt show that it has increased, so his consultant has said it’s time to restart regardless and support through transfusions and EPO injection (is that the same as a growth injection that you mention?)

His platelets have gone as low as 27 but mainly they’ve hovered at 39-42. They were hoping he would get to 50 before restarting. He is very anaemic (63). His neutrophils are 1.63 and have always been just below ‘normal’

Interesting you mention TKI switch as I’m not entirely sure I understand why it’s been suggested he should switch given he was only on dastanib for 2 weeks and his platelets first showed a drop before starting. I’ll revisit that conversation!

Thanks again for sharing your experience and for all the detail - I hope your journey continues to improve!

Take lots of care!!

K.

Hi!

In my case the growth factor injection is for increasing neutrophil count. I do not have much trouble with anemia, my concern is neutrophils

EPO aka erythropoetin is an active biological substance for increasing the production of red blood cell. It used to fight the lack of RBC and low hemoglobin. Transfusions are also used.

I think it may be wise restarting the drug. Keep your heads up and those times will pass at some point.

Timo

Thank you! I’m looking forward to these times passing!

Thank you again for taking the time to reply!
k 😊