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Neck lump issues

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Hi everyone

So this last week has been a crazy ride for me.  I have been on dasatinib since 4/12/15 with a reasonable, if not great response.  After 18 months my BCR-Abl levels are at 0.16% - not yet MMR, but moving in the right direction with the hope of getting lower by the next appointment.  My doctor has, sensibly in my opinion, not panicked and has decided to keep me on dasatinib as the levels keep dropping every time, albeit slowly.  However, I have a completely different problem now in that I have two rapidly growing lymph nodes in my neck - one at the base of my skull and one lower down my neck on the neck muscle.  This is concerning because it can be a symptom of lymphoma, another cancer that has mestasised to lymph nodes or (far worse) an extramedullary blast crisis of CML, which apparently can happen even if there is no sign of CML progressing in the blood or marrow.

The doctor ordered an immediate ultrasound and, when the nodes looked suspicious, she arranged for a fine needle aspiration of the neck lumps on the same day.  Here in South Africa we are very fortunate that these things can happen so fast and it's not a long time waiting for appointments.  One week later and the results are in - all negative for everything - but to be on the safe side I have to have both of these lumps removed by excisional surgery tomorrow, just so that they can exclude the horrible conditions listed above.

My question is simply whether anyone has had this progressive lymph node enlargement before when treated on dasatinib?  I found an article in the Blood journal that reports 9 patients in France who had this very same issue on dasatinib, with a median occurrence 20 months after the start of treatment (which is about the time I've been on it).  Dasatinib was discontinued in all these patients and their nodes reduced in size within a month.  So I'm wondering whether the excision is truly necessary!

Thanks in advance and good luck to everyone.

Martin

Martin,

This must have been really worrying for you and it is good that you didn't have to wait around too long for the results of your biopsies. Very reassuring that they were negative and I assume your doctor is recommending surgery just to be on the safe side. However, I do agree that given the paper you identified about the same issue that was experienced by the french patients on dasatinib should go some way to persuade your doctor that the surgery is probably unnecessary. If you feel you would rather not undergo surgery to remove those lymph nodes and given the biopsies of both were negative, then why not ask if you can change TKI? It may be that you are one of a minority that has this as a side effect and so a change in TKI may reassure both you and your doctor. 

You may also try to take a new look at your diet and increase any supplement that you might be taking to support your immune system? I am not sure if you remember one of our members (US patient) who developed non-myeloma skin cancers after starting nilotinib (I think). He found an Australian study that was adding high doses of Vit B3 (niacin/niscinamide at 1000 mg per day) to the daily regimen of CML patients who had this same side effect of skin cancers - so far I think it has proven to be successful in slowing or even stopping the skin cancers (many developing on a weekly basis) although I haven't had an update from him for a month or so but I assume all is well with the addition of niacin to his diet. 

My point is that there can be a 'simple' explanation and way of countering some of the side effects that a minority of CML patients develop. Just an idea. 

Nevertheless, I am really glad your results failed to show either of the other possible explanations for your swollen lymph nodes.

Best wishes,

Sandy

Hi Martin:  I have been on dasatinab for a little over 8 years now. I did have some sensitivity in the lymph node areas especially under my arms. I've not experienced the degree which you have. Just out of curiosity - what is your daily dosage level. Hope you are feeling better. Let me know - thanks, Philip

Dear Sandy and Philip

First, thank you once again for replying to my posting and for the very good advice you gave.  Sandy, I decided to go under the knife after all because I felt it was the only way of reaching a definitive diagnosis, and I haven't discussed the French study with my haematologist yet.  Hopefully there will be some good news!  I'm also going to look into the possible supplements that you suggest - currently I take nothing, and it could be that certain vitamins or minerals need a bit of a boost.

What worried me a bit was that the general surgeon who did my excision told me that this was being done "to grade and stage the lymphoma", which hasn't been confirmed by blood samples.  However, the last line of my pathology report says "The presence of the relatively monomorphic population, in conjunction with the dim CD20 by flow cytometry, are not definitive but raise concern for an underlying low grade lymphoproliferative disorder."  I guess that this doesn't rule out a second cancer after all - I'm just thinking that the odds of getting both CML as well as some type of lymphoma must be astronomical!  I will keep everyone posted when I get the results.

Philip, to answer your question:  I'm on 100mg dasatinib and have been since the very beginning, without any adverse effects apart from my hair turning grey overnight.  Maybe it's worth mentioning this French study to your consultant next time you go?  It may be significant, I don't know.  The article is called "Reversible lymph node follicular hyperplasia associated with dasatinib treatment of chronic myeloid leukemia in chronic phase" by Roux et al.  Attached is the link: http://www.bloodjournal.org/content/122/17/3082?sso-checked=true (I hope I'm allowed to post links here, so sorry if I'm breaking any rules of the forum!)

Good luck, everyone, in your continued recovery.

Best wishes

Martin

Hi Martin,

I may be able to add to what you are experiencing in that I commenced Glivec in 2007 and in 2012 experienced a swollen lymph node "a small posterior triangle lymph node but there was nothing clinically suspicious or untoward other than a very small  individual node which was palpable.I advise him to monitor this but I dont think any further action is required at the present time as it seems to be a normal lymph node to me"(extracted from my consultants report to my GP).I was told that it might take 18 months to disappear and it turned out to be the case.My consultant had a particular interest in lymphoma perhaps even more than CML and when asked if there was evidence of the development of this he said that in his experience unlikely.However soon after I experienced some knots and tensions in the sternocleidomastoid part of the neck which was extremely difficult to treat ;I tried acupuncture, physio and the usual thrice daily exercises and stretching but it lingered on for nearly a year.I took advantage of a walk in clinic that wanted to publicise the dangers of mouth ,throat and neck cancers and the specialist who was qualified as a surgeon and a dentist examined me and said it was musculo-skeletal in origin and carry on with the physio. He added that that it was probably drug related.He gave a second opinion on the lymph node and concurred with the first diagnosis.I did mention that I had private health insurance and he said that if it increased in size he would do a fine needle biopsy and perhaps offer surgery as a private patient.

I hope this helps but I would hesitate to draw to many analogies between our cases.Yes I was really worried and concerned and the neck was very, very painful but did eventually clear up and have had no re-occurrence since At the time I was was very satisfactory from a heamatological perspective  and also in satisfactory molecular remission.The only suggestion I might make is that you monitor neck issues and stiffness/swelling and address that if it arises with perhaps physio or another consultation.

With best wishes for yourself

John