I have been off dasatanib for 18 months now and all bloods coming back well. I was effected greatly by this drug and still have a small amount of fluid in one lung according to recent cat scan. Now I have been diagnosed with Follicular Lymphoma low grade after finding a lump above my collar bone. Tests have picked up several more in tummy / arm pit. Oncologist has opted for wait and watch approach as he said chemo could bring back the c.m.l. At the moment I am beside myself with worry and Trey or anyone can you please, please help me. This is my 3rd. diagnosis of cancer, I had breast cancer in 2005, so not a happy person at the moment. Thankyou.
Posted 18 August 2016 - 08:49 AM
Wow I really feel for you, and am so sorry you have to deal with this new cancer! Hang in there and wishing you the best!
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
Posted 18 August 2016 - 08:57 AM
Sorry to hear about this additional burden. Follicular Lymphoma (FL) is a disease of the lymph blood cells and early signs are enlarged lymph nodes, as you are experiencing. Your Onc is right to avoid chemotherapy until symptoms become more widespread, meaning you would have an enlarged spleen, blood count changes, night sweats, fatigue, etc. But you could have local radiation therapy on the enlarged nodes, so you might want to discuss that with your Onc.
But first, I would want to make sure the diagnosis is correct. Although you have been off Sprycel on a cessation "trial", Sprycel has caused enlarged lymph nodes in some patients. I would ask how the diagnosis was done, and if a lymph node biopsy confirmed it is FL? Also, was a BMB done to see if there are any chromosome translocations? FL often has a t(14;18) translocation.
Posted 18 August 2016 - 05:50 PM
Thank you Cathy for you kind words and best wishes. Trey , thank you for your amazing and informative response. I have taken it all on board and will speak to my Dr. about my options. I did have fine needle aspiration, but he said something about that test being unable to give an accurate assessment of the stage of the lymphoma. I had a cat scan after breast cancer and that picked up many very enlarged nodules, but an operation to test them came back negative. Now Oncologist is saying I have had this for at least 11 years. !No Bmb was done and when I asked was told not required at this stage. I was told should I experience heavier night sweats [ I do , on occasion get light ones ] weight loss, to ring him. The large node in my neck is pressing on my major vessel there I am sure as every night I feel a pulsating feeling and this is what drew me to find this very large rubbery lump. I was told yesterday there is a cluster beside it. I have written done what to say next visit Trey, and hopefully will be a more productive visit than yesterday. I have to wait 3 months unless I experience any other symptoms. Bloods will continue monthly. He did say no lymphoma showed up in the test for that that they did. i thankyou from the bottom of my heart, you are a wonderful person, always willing to help us out and I am sorry for this long letter. I feel as though my back is against the wall and yesterday I was almost feeling why bother, I am going to die just leave it all. I was shocked follicular cancer is incurable . My spleen, kidneys etc. showed up fine on the cat scan Trey. Once again, my sincerest thank you for taking the time to address my worries and I wish you and all the wonderful people on this site the very best. xx
Posted 18 August 2016 - 09:42 PM
Reading about your history and then to find out you have a 3rd cancer is beyond unfair. I am so sorry you have to deal with this again. You clearly have an undeniable history of perseverance and success with your previous diagnosis. I hope you can draw strength from that on your journey forward.
Posted 19 August 2016 - 09:59 AM
Historically FL has been diagnosed by cutting out (excising) the entire lymph node to biopsy it. Fine needle aspiration has not been as reliable a method, although recent advances have made it somewhat more reliable. I would ask for a copy of the biopsy report and also ask why an excision biopsy was not done. See page 7 of the following link where it discusses why excision biopsy is the preferred method for diagnosing FL:
The BMB may be delayed to allow enough cells to be found in the marrow since it is like CCyR in CML patients where there must be enough leukemic cells to be found by the BMB, so maybe it is a bit early for the BMB, although I would want to have one done during the next year. There can be different treatments based on whether there is a t(14;18) translocation or not. But you are not ready for those treatments anyway. But if they want to use chemo on you at some point, make sure they do a BMB first.
The nodes found during breast cancer therapy may or may not have been related to FL. It would be assumed they were from the breast cancer, and maybe they were. There is also a FL that begins in the breast, but it is very rare. I doubt it was associated but here is some info in case you want to read about it:
There is no way to know if the enlarged lymph nodes found during breast cancer treatment were caused by FL or by the breast cancer itself, so that issue cannot be used to determine how long you may have had the FL.
Posted 21 August 2016 - 07:35 PM
trey I had a lumpectomy and radiation after breast cancer. A cat scan later picked up the nodes and I had an exploratory op. that came back clear. All has been well until I was diagnosed with C.M.L. nearly 5 years ago. I was put on a trial for the drug Tasing [ cant remember how to spell it ] and that presented too many problems with my liver and I had to cease it. So, I have been on Sprycel 50 mg. since. I was wondering if you have heard of any one developing Lymphoma with C.M.L. ? I am going to ask about why I didn't have an excision done as even the Onc. stated that the F.N.A. is not a clear indicator of what stage I am at.....??? something about doesn't get to the core ? Maybe the Sprycel caused this and I really don't have Lymphoma..If I could, I would jump on a plane and go to the new cCancer Clinic that recently opened on the mainland for a second opinion.
Posted 21 August 2016 - 08:03 PM
CML and lymphoma are not related. But breast cancer treatment and lymphoma can be related. And possibly breast cancer treatment and CML can be related. It is not the cancer that causes other cancers, but rather the chemo and/or radiation therapy. Sprycel does not cause lymphoma, but it can rarely cause benign lymph node swelling.
I doubt a second opinion would be as useful as an excision biopsy and a BMB. Those would more clearly define your issue for any Onc even if he is not a specialist. But there is no hurry to do them. I would just wait for a while, maybe six months to a year.
Posted 22 August 2016 - 06:14 AM
Thank you Trey, I will wait and try and remain calm. I see the Onc. in November and we take it from there. Was such a relief that I can leave it for six to one year as I had just about written myself off !!!
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