Hi there- I too went through the lymphoedema battle and did find a lot of disheartening info...but keeping at my research I also came across enough info on lympho massage, fighting inflamation with herbs and supplements and exercise routines that eventually allowed me to design an upper body calisthenics routine that helped me get my face back and, for the most part, keep it. Sure there were setbacks and research is still continuing. Now fibrosis has been the object of my passion, since my neck turned to beef jerky on the radiation side. Yes, extremely limited head and neck movement, pain, disfigurement on neck, jaw problems, swallowing problems and more. But again research, research research (use engines other than Google by the way-I prefer Duck) has come to the rescue. Of late my experimenting with supplements went astray (yes, supplements can interact badly like any lab made drugs) and I lost some ground...but I'm back on track. I agree you shouldn't believe everything you Google, but I also believe exhaustive research and informed trial runs self medicating can help one achieve results superior to established medicine for the money. Cheers
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Hi Mimi-meme, 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.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.