Hi everyone. Just a quick background of my HL story;
-2015; Diagnosed with HL after I found a hard lymp nose on my right neck. Symptoms were weight loss and night sweats.
I relapsed shortly after finishing my first line treatment. Needed a stem cell transplant and maintenance therapy
-2016: Reached remission and every blood work and scans showed no signs of disease.
My last blood work was on 25 October 2019 and everything was fine.
These couple of weeks I have been losing weight and I notice two enlarged lymp nodes on my neck. They felt different than the one I originally had when I was diagnosed with HL.
I noticed light bruising on my legs. One was really painful and noticable. I also started to have muscle and join paint. Couple days ago(3 days after my enlarged nodes) I ended up with a fungal disease around my mouth and between my buttocks. I also notice my bowel movement changing.
I eventually thought I relapsed with HL. But my symptoms seems to look like Leukemia? Leukemia and HL are both blood cancers. Has anyone experienced anything like this?
You don't mention what treatment protocol was used for your HL.
I'm currently having R-CHOP for NHL and I was warned that doxorubicin does somewhat increase my chance of developing several types of leukemia. R-CHOP also increases my risk of developing bladder cancer in the future.
Obviously your current symptoms need to be assessed by your haemotologist as soon as possible so that if you have developed a secondary cancer treatment is not delayed.
I agree with Lolie, you need to speak to your hematologist asap. I was diagnosed with NHL in 2003 and received CHOP ( which is prior to the R-CHOP, but I did receive the R, at the time it was called rutaximab, a couple of years later), all that worked quite well until I relapsed a few years later with CLL, to stage 4. I was treated with FCR which eventually cured it but as Lolie stated increases the chance of further cancers which happened to me and in 2016 ended up with MDS (terminal, from the original CHOP) unless of course you have a bone marrow stem cell transplant, which I did in early 2017. Now cured. At the time I knew something was not right and just did not seem to recover, my blood number were always very low, I too thought I had relapsed with NHL or CLL.
As to some of the symptoms, did not loose too much weight but had inordinate number of swollen lymph nodes (like tennis balls) neck, under arms, all through my body and compromised my kidney function, was neutropenic for several years (compromised immune system) and had many infections including fungal, lungs and sinuses as well as shingles. Many stays in hospital, no real bruising, had muscle/joint pain but they put that down to the medications. Bowels were a real problem for most of that period.
Over the years I have received 70+ doses of chemo + whole body radiation, none of it was easy but in many cases is doable, its not all doom and gloom, be sure to open up to your doctors about all of these things you are noticing, keep some simple records to speak to your doctors about, have a friend or family member attend these consultations as I know you tend to forget or distracted by the changes in conversation, far too much for one person to take in. I always had a visit with my GP after the specialist to discuss all the stuff I did not understand or question why they were doing this or that. The swollen lymph nodes may be just a simple infection (had plenty of those instances). Go get checked out.
Did not quite follow did you have the stem cell transplant? I am post transplant 34 months and still recovering, very difficult procedure, for me mainly mentally as you are being as they say 'reborn'. Lots of complications, very long stay in hospital, changed blood type, had to 'redo' all of my immunization shots again, quite a few 'legacy' items still trying to resolve but still here. Let us know how you get on.
Be part of this supportive community