Hi all, I was diagnosed with lymphoma of above in May, and started two months Rituximab treatment, once a week….I now have to be monitored every three months for two years.
i had my first monitoring consultation a month or so ago and I’m in remission, which is good news and I know for peace of mind at least I will get monitored every few months.
I was given Rituximab as my consultant said is best treatment for someone with Sjogrens Syndrome which I have probably for 10 years.
My question is this, has anyone else had this treatment and found that they know tend to get tiny skin sores, over their body, mainly on back and arms? I also had steroids given at same time as the Rituximab. I’ve also found that even though I’m active doing regular workouts, I’ve put on weight. A nurse on Macmillan said thst both these drugs can cause you to gain weight, I wonder if anyone else has had increase weight from it? Next time I see my consultant I will mention it anyway.
Any views would be appreciated. Btw, I was told it is treatable, but it won’t go away, so just hoping it doesn’t return too soon. Consultant said possibility it can return within 5 years.
Hi Fab123 and a warm welcome to this corner of the Community I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with my type of rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Over my 24+ years I have relapsed many time with my CTCL but I am now 8 years out from my last treatment, turned 68 the end of last year and am doing great.
As part of my many treatments I must have had about 600hrs of Rituximab…… I can’t say I had skin problems directly related to this but as I have a skin Lymphoma it’s hard to separate what is what……. but I will say that the skin can react to treatments as it is a very sensitive functioning organ.
I actually lost 27kgs over my main treatment and I was on a lot of steroids……. but it is actually normal to put weight on when you are having steroids. My brother experienced this and he was not being treated for cancer.
These can all be seen as Side Effects of Treatments…… but needs must.
Your Heamatology team most likely would send you to see your GP about your skin issues, have you talked with tour GP?…… as this could be fixed using some creams but also some antihistamines.
Getting to see a Dermatologist my prove challenging but if required get your GP to refer you.
The effects of steroids do stay in your system for a good period of time but I have no idea as to the length of time post stopping them you should see a difference.
But I will say that steroids do make you eat more so has your diet changed significantly over the period since you started them?
I was put on a high protein diet and started putting weight back on but did not come off the diet and ended up being pre-diabetic so had to change my diet, get some of my weight down and was able to get my sugar down.
During treatments our bodies basically become one big science experiment and each body will react ever so differently. My Haematologist says that some people find that their metabolism changes in various ways, some fir the good, some not so good.
Yes some folks will find the Peripheral neuropathy (nerve damage) can last for a good period of time post treatment but with some regular activity and finger stretching this should all but clear…… mind you it took a good few years for my PN to clear completely.
