Hello, I was diagnosed back in Jan 2016 and have been on WW since. I'm 11q del, unmutated and complex karyotype, that's called the triple whammy! although my blood counts have been fairly stable over the last year. WBC hovers around 18, ALC around 10, RBC 4.3, PLT around 200, and the others are rather normal.....lot's of swollen nodes everywhere. I had a small walnut sized lump in my hamstring area a year ago that all my doctors said not to worry about, however now it's grown to around 4.9 x 2 cm according to the ultrasound, MRI and x ray I had done. At first they thought it might be Sarcoma, but Dr called me today and said not likely based on the MRI. It did not meet the characteristics of Sarcoma and she was fairly certain it was not. She said it very well could be related to my CLL and wants to do a biopsy. She noted the location seems a little odd for a lymph node as it's located toward my upper thigh kind of between my knee and cheek, on the backside...hamstring area, although it is not imbedded into the muscle. I'm relieved it's most likely not Sarcoma but a little puzzled, could it be a swollen lymph node in my leg....? The Dr said they tend to follow the path which does lead them right to CLL and it's most likely related to my disease. I've never read about anyone with swollen nodes in the leg but perhaps it's out there. I did have a CT scan recently which also showed a 3.4cm node in my abdomen and others fairly swollen as well. I know that being 11q del means my particular flavor of CLL comes with Bulky nodes, so that's probably what it is. My question is.... has anyone out there experienced anything like this....? just curious...of course I will find out soon enough but it's more waiting, more tests and then wait some more for the results, it seems there's never any rush to get the results back to you...it's wait, wait, wait....Ahrg!!!!
swollen lymph nodes in leg ? : Hello, I was... - CLL Support
swollen lymph nodes in leg ?
You are right that with 11q, you are prone to more bulky lymph nodes. There are hundreds of node locations throughout our bodies including throughout our legs. Check out the two images leg lymph nodes front and leg lymph nodes rear here: nhlcyberfamily.org/nodes.htm
Neil
PS I had what my GP thought was a lipoma appear on my top thigh quite a few years prior to my eventual CLL/SLL diagnosis. My specialist subsequently identified it as a lymph node...
interesting as this lump I have was also noticed before my diagnoses and GP thought it was a lipoma as well. The images in the leg you referenced make sense, mine seem just little higher than the one pictured but it's in the ballpark. I'm really just very grateful it's not a Sarcoma, I've been waiting all week for the MRI results to come back thinking I may have a secondary cancer....Whew! I dodged that bullet. Well, I better make an apt to see the good dr Sharman to see what's next. I suspect treatment is near since it is rather painful sitting in a chair or a car with this lump in my leg. On my last visit to Sharman he said when my time comes for tx he would recommend Ibrutinib or there was a trial here in Oregon for a drug called TGR-1202 he felt would also be a good choice. I've read lots about Ibrutinib and am comfortable going down that path, but am a little worried about the side affects, it seems some people have very little side affects from and some have worse. I don't know much about the TGR-1202 other than its a Pl3 inhibitor. I want to leave options open for down the road so maybe starting with Ibrutinib is best and leave the PI3 inhibitor for down the road if necessary. But then again in 5 years there may be even better options, so who knows. I'm worried about the a-fib and other side affects from Ibr.... although I'm kind of excited to be rid of the pesky swollen nodes. At least I have options.... and for me I'm kind of glad they don't include Chemo.
Hi Garrick,
I will start off by saying I am thrilled for you that your lump was not related to a sarcoma. The waiting for results is pure torture so glad that part is over. I am also 11q deleted and unmutated. I was diagnosed in Nov 2013 at age 54 and started treatment a little shy of three years from diagnosis. I was in an ibrutinib vs. acalabrutinib clinical trial and was randomized into the ibrutinib arm. I was on it for 10 days but had to stop due to a bleeding issue which required treatment with a unit platelets. I was also taking a blood thinner at the same time which put me at a high risk for bleeding. In just 10 days however the ibrutinib did an amazing job in reducing my huge lymph nodes!! Since I had to stop the ibrutinib, I qualified for the TGR1202 clinical trial for those intolerant to ibrutinib. I am just finishing up my second month on this new wonder drug. I have had absolutely no side effects from the TGR1202!!! Most of my lymph nodes are no longer palpable, and white blood cell count is normal, along with a normal absolute lymphocyte count. I remain anemic but my hemoglobin is up from 8.8 to 10.4. You are in great hands with Dr. Sharman and I am sure he will point you in the right direction, but wanted to let you know 1202 has been working great for me.
Best of luck going forward!
Nan
Hi Neil, Awesome illustrations on your recommended website. I have a lump on my neck that is more prominent than the others which had me worried. I could find it on the illustration..... I figured it was from CLL, but now I can point it out on the pictures.... Thank You!
Thank you AussieNeil for that reference
I wasn't always 11q but am now. I generally did not have huge issues with my lymph nodes but one time I developed a super bulky node in my groin that totally erupted on me - they biopsied and it was my just my CLL. It was huge and actually broke the skin - turned out I had some kind of infection and it blew up my lymph node. Anyway, just know that sometimes random weird things happen and they become so stressful cuz you think it's morphing into something else - and most times it's not.
How does one distinguish a lipoma from a swollen lymph node? I have many lipomas dating back decades; however, I'm seeing many new ones and I'm wondering if these are actually lymph nodes. Thanks!
That question is probably worth a separate post! It was discussed not that long ago, but I can't find the relevant post.
HI Garrick
Glad it isn't sarcoma... I too am 11q, complex, unmutated, etc. Diagnosed June 2015 (probably had it for 5 years or so before) and needed treatment within a year for nodes, fatigue, night sweats, counts doubling. I started the NIH study of acalabrutinib July 2016 and am having a great response. Lymph nodes went away fast and blood counts normal within 3 months.
To qualify, treatment naive need to be either 17P del, TP53, or NOTCH 1. I went for initial consultation and they did the blood work on my. I didn't have 17p or TP53, but was NOTCH 1 positive which qualified me. Your tax dollars pay for everything. I feel so fortunate to have this option.
If you are interested, let me know and I can give you the contact number of the coordinator.
Best of luck,
Sandi
Thank you Sandi, I would indeed like that number....Acalabrutinib would be my first choice if there was a trial available somewhere near me. I'm in Portland but could drive up to Seattle or Tacoma if necessary. I do not know if I have the Notch1 mutation, not even sure what that is. It does seem all of us 11qers have similar markers so perhaps I am.... I'll ask for the test to find out. I don't have any night sweats or fatigue...other than the usual fatigue from having 3 kids...9,12 & 14. I have numerous nodes swollen, so that's a little concerning, blood counts all fairly low / stable...WBC 18.4, ALC, 12.7, neuts at 4.73 the rest mostly normal. I've read great things about the ACP-196, great hear your doing well with it, I hope that continues on for many years.......I'd love to join in on all the fun! haha.
My son/daughter-in-law and 2 of 4 grandkids live in Portland (they are 2 and 7 months). NIH is in Bethesda, MD. You may want to fly into DCA (direct flight) and get a consultation. They will do all the bloodwork for free and check for 17P/TP53 and Notch 1.
Contact Pia Nierman at 301 827 -1094 and tell her that I recommended you.
You are not eligible for their Natural History Study as you might need treatment within a year. Good to get ahead of this stuff though.
I have read lots of Sharman's posts and adore him. If I lived in Oregon, I would definitely see him. I have been to see Bruce Cheson in Georgetown, John Byrd at NIH (Love him) and NIH. As of now, not sure if anyone else is doing clinical trials of just acalabrutinib that aren't randomized with ibrutinib or something else.
Let me know if I can be of any other help.
Best,
Sandi
I'm on a randomized trial at Mayo in Scottsdale, AZ - I travel there from CA - comparing ACP 196 with Ibrutinib - I was randomized to Ibrutinib. I understood it will be 18 months until the FDA approves ACP 196 for front line treatment - is that true?
It will likely be approved for second line first, but there are no timelines... depends on the data.
~chris
So the people I read about on this board currently on ACP 196 are all on trials correct?
Yes...its not approved anywhere, perhaps later this year an application will be filed with the FDA and the EMC in Europe.
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