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Benign lymph node swelling resembling lymphoma

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Hi everyone

This is a follow-on message from a previous post I made where I had issues with neck lumps on dasatinib but I thought that the results of a difficult six-week experience merited their own thread, in case someone else has this problem in the future.

In summary, I developed two swollen lymph nodes on the right side of my neck about 18 months since starting on dasatinib.  The larger one was almost 3cm in length and prompted concern from my haematologist.  She suggested ultrasound sonography followed by a fine needle aspiration of the affected lymph node.  When this suggested possible malignancy, the lymph node was removed surgically.  I wasn't worried at all at this point as I had read some research where a small group of patients had developed swollen lymph nodes while on dasatinib, and this study was consistent with my own experience, both in terms of the timing and the symptoms.

Unfortunately, the surgeon who removed the lymph node was, to put it mildly, rather undiplomatic.  Before the surgery, he emphasised that they were taking out the entire lymph node "to grade and stage the lymphoma", as if it were a foregone conclusion that this was a lymphoma.  This terrified me as I was already coping with one cancer diagnosis, and I thought that it would be extremely difficult, if not impossible, to now have to cope with a second one.  I was promised pathology results within "two to three days" (in South Africa, these things are much faster than in the UK) and began worrying when they were not back after a week, when I was scheduled for a follow-up appointment with the general surgeon.

At this appointment, the surgeon told me that, while the wound was healing well, he had "not a shadow of a doubt" that this lymph node was malignant, and that it was "critical" to get the pathology report as soon as possible in order to start the necessary chemotherapy, because the size of the lymph node was a concern, as well as the speed at which it had enlarged in size (from nothing to 3cm in less than three weeks).  Also, the pathology report was likely to take a longer time because the doctors would have to determine whether what kind of lymphoma it was.  This, of course, was devastating news for me and I started to gather information about how lymphoma is treated.  I wondered how I could cope with RCHOP chemotherapy on top of the dasatinib.

One week later there were still no results, and I phoned the haematologist's office.  Later that day, I received a message from the receptionist saying that an urgent appointment had been scheduled for me the next day and that I must please come in at 15:00 - obviously, this added to my anxiety as I assumed that good news could be communicated over the phone and that the bad news required an office visit.  I prepared myself mentally for a second cancer and a new challenge - it felt as though I had won life's unlucky lottery!

Fortunately, the office visit brought the news that, after a barrage of tests, the pathologists had not been able to find anything suggesting lymphoma.  The time taken was so long because they had to keep on testing in order to exclude all possible types of malignancy, and they concluded that I was experiencing reactive lymphoid hyperplasia, which is basically a benign lymph node swelling caused either by illness, HIV (which was excluded by previous blood tests and because I don't engage in any of the risk behaviours associated with that condition) or drug complications.  So I had to make the decision on whether to discontinue the dasatinib or to continue.

Since I am nervous of starting nilotinib and since I have few other side effects on dasatinib, I decided to stick with it for now.  I will have to monitor my remaining enlarged lymph node carefully and see the doctor if it increases in size or if any new ones develop, but for now I'm staying on the drug (even though I haven't reached MMR after 18 months of trying).  The three main messages I want to give the CML community from this experience are as follows:

1) Dasatinib can, rarely, cause swollen lymph nodes that mimic lymphoma.  Be sure to consider this possibility if this happens to you!

2) If a pathology test takes unusually long to be completed, this doesn't have to be bad news!  In my case, it was quite the opposite as they may have found a lymphoma quite quickly - the length of time meant that the doctors were testing every possibility and coming up empty.

3) An "urgent" office visit also doesn't always mean bad news.  I know that many of us were diagnosed originally with urgent referrals to a haematologist, but "urgent" doesn't always mean "terminal".

Good luck, everyone, with your continued recovery.  I am just posting this in the hope that it helps a minority of patients who develop these neck lumps - hopefully few people need this posting!

Best wishes from South Africa

Martin

Bloody hell! That all just have cranked up the stress levels to 110%. I’m so pleased this had a good ending for you, and thank you for the detailed post. I have no doubt that everything you’ve said about this ordeal will help others in the future who face similar complications. 

 

David. 

Thanks for your in depth post, Martin;

I'm starting Dasatinib (in a few days) after 6 months on Imatinib (due to my BCR-ABL & Ph+ still being too high)

I'm shocked (but it doesn't come at a surprise) how quick doctors operate on swollen lymph nodes, it seems yours wasn't anything bad, just swollen.

I remember as a child I was often a bit poorly and my lymph nodes were swollen neck (I suppose you mean by "neck" the ones under the jaw), under the arms & groin, and they always went back to normal after a certain time.

Thanks again - I'll see what happens - all the best to you for now!

Martin I was so happy  to see this post . My husband has been on Sprycel for three years now ( currently in 60 mg). He discovered an enlarged lymph node and had an ultra sound. Called back for tomorrow for more tests. I was googling looking for it being a possible side effect of Sprycel to stem the terror of a second cancer diagnosis and came across a couple of cases such as you wrote about. We are hoping it’s the same for my husband. Have you been able to continue on Sprycel ? And all well with your lymph nodes ? Hope you are in good health. 
best Louise 

Martin I was so happy  to see this post . My husband has been on Sprycel for three years now ( currently in 60 mg). He discovered an enlarged lymph node and had an ultra sound. Called back for tomorrow for more tests. I was googling looking for it being a possible side effect of Sprycel to stem the terror of a second cancer diagnosis and came across a couple of cases such as you wrote about. We are hoping it’s the same for my husband. Have you been able to continue on Sprycel ? And all well with your lymph nodes ? Hope you are in good health. 
best Louise 

Dear Louise

Thank you for your message - I'm so happy that this post of mine has been useful to you and your husband, because from what I understand it is extremely rare for patients to develop lymph node enlargement on dasatinib (it isn't even listed as a possible side effect in the patient information booklet!)  But it exists and happened to me, and hopefully your husband's case is the same as mine.

Often we, as patients, have to advocate for ourselves on this CML journey.  I spent hours researching this topic on the internet and eventually found three articles describing cases of enlarged lymph nodes - one was the group of patients in France, one was a pediatric case of a young child with CML and then there was a further study of patients in Europe.  With printouts of the articles in my hand, I approached my haematologist and asked her to read them and to switch me to imatinib.  She was very interested but felt that she needed a second opinion on whether to switch, and also whether it was possible to go "backwards" from dasatinib to imatinib.

In the next few months, my doctor asked various experts around the world, including the eminent Dr Tim Hughes from Adelaide, for their advice on the matter.  Eventually, in May 2018 (10 months later) I was given the go-ahead to switch to imatinib 400mg.  By this time more lymph nodes had begun to swell.

Astonishingly, it took less than a week for every single one of the lymph nodes to return to their normal size!  It was like a miracle - after the first day on imatinib, I already felt these rock-hard nodes softening, and they have never been enlarged since.  For me, imatinib has had more annoying side effects than dasatinib - I feel more fatigue, have bone and joint pain and the muscle cramps seem worse - but all of them are low-grade and I am glad I made the decision to switch.

Interestingly, my BCR-Abl results, which had plateaued at just below 0.1%, suddenly took a massive downturn and I got as low as 0.005% on the imatinib.  I had my first uptick this year, though, and my last reading was 0.011% (starting to worry a little that I'm losing response, and anxiously awaiting the results of my next test in November).

So that's the outcome of my story!  I really advise your husband to look into this - if his levels are low, maybe his doctor will allow him to take a week's break from dasatinib to see if the nodes reduce in size?  I wish I had done that, because it would have spared me a nightmare 6 week period, but I would definitely not interrupt treatment without the green light from the oncologist.

I sincerely hope that the dasatinib is causing these enlarged nodes in your husband and I wish him, and you, good health!

Best wishes from South Africa

Martin

Hello I am 10 months in on Dasatinib and have two swollen nodes one I front of my ear lobe and one directly behind. I have one of the better CML specialists in the country and is certain it Dasatinib induced follicular hyperplasia. I have had one nose swollen for almost 2 months and the second is about a week. I go for my year check in June and I feel I will be switched to a different TKI or reduced dose. I am on 100 mg and have responded well into MMR so I definitely prefer to stay with it. But I am worried I will have no choice and I don’t see just leaving the swollen nodes as an accepted side effect. I wonder if any others have had similar experience and share your story. Thanks for listening 

Hi Craig

I'm sorry to hear you are struggling with the same problem I had! It seems rare but does happen, and I'm so glad your specialist understands it.

My suggestion is to try to change to something else or lower dose. In my case I was switched to imatinib and so far it is working well, but I did feel better on the dasatinib and wish I had tried lower dose. But my doctor was worried that the benign reactive nodes could become malignant in time. They all went down in less than five days when I stopped Sprycel.

Let me know how you get on!

Best wishes

Martin

Hi Martin and thank you for the response. I was wondering if you went right into the Imatinib or did you stop TKI’s in between the change? If you stopped how long was the pause? I am inclined to request a brief pause until the nodes shrink and start again to see if they come back or try a lower dose. I agree with you in the fact Sprycel is treating me good otherwise and I would rather try to stick with it. Kind of sticking to the evil I know. Thanks again for your time and sharing your experiences.

Cheers!

Craig

Hi Craig, I also recently developed an enlarged lymph node on the right side of my neck. The biopsy was benign and it is also believed to be related to the Sprycel (currently on 140mg) -- although I didn't have it when I was on 100mg. My doctor is considering switching me as well, although partly because my progress is maintaining around a 0.2 PCR, although I am also overall happy with Sprycel and would not want to switch, but I am not sure if that will be an option with the current side-effect. What TKI is your doctor thinking? My doctor is thinking of ponatinib, although I am a little concerned about that because I have heard of possible heart side-effects with that medication. Wishing you the best. 

Hi Deraj - thank you for sharing your experience and I am sorry that you are also having the same reaction. I am also not in favor of changing therapies since my response has been been really good on Sprycel and the side effects are tolerable and the ones I “know” and “understand”. The CML specialist I have is one of the better ones in the US - maybe globally so I trust his guidance. Having said that we have not discussed a second option yet - I assume we are going to have that discussion in my next appointment in June. My dilemma I am fighting inside myself currently is if my Dr recommends I stay on Sprycel even though I have some swollen  lymph nodes I am not sure if I am OK with it. I do trust him completely but it is a little unsettling knowing I have these and can easily feel them. As far as a new treatment- I am sure he will also review my other condition which is type 2 diabetes. I believe some TKIs raise your blood sugar and so forth but if I had a choice I may look for switching to Bosulif (bosutinib). I know I would not do well with the therapies I have to take twice a day etc. I wish you luck and I will report my course once I complete my next visit which is my one year. Thanks

Hi Craig, Thanks for your reply -- sorry we are both in this predicament, but it is comforting to know that there are others who are having similar experiences. What is your reasoning for bosutinib if you had the choice? Is it less likely to affect blood pressure? My doctor is considering ponatinib, but I will see at my follow up at the end of the month. I am not sure if staying on Sprycel is an option for us, but I guess we will ask. I am also in the U.S., maybe we can stay in touch about this if you would like -- my email is jms.ny.2021@gmail.com

Thanks sounds good- email just sent to the address jms.ny.2021@gmail.com so now you have my contact as well. We got this!!

Hi Craig

Sorry for the late reply - I don't check this forum as often as I should! I hope you are getting on well with your decision as it is a tough one.

Just to answer your question: I took Sprycel for the last time one night and took imatinib 24 hours later, at the time I would normally have taken the Sprycel.

I hope things settle down soon! The lymph node issue was by far the worst part of my CML journey but rest assured that it is a known, of rare, side effect of the dasatinib.

Good luck and best wishes from South Africa

Martin