I wish I had a good answer for ya.

Guess given the day, how well I feel and my ability to express gratitude for all the good things, determines my level of being able to "suck up" the challenges and be a good little patient / not "complain" or question things. I told my new PCP last month that my pain issues were returning with cramps and could not seem to get back to a consistent level of daily energy / stamina despite the good diet and increased, pretty regular exercise. She kind of scoffed and told me: "You have Lymphoma!" (like I don't know). But I took it as a type of smack in the face and reality check that I maybe should not even try to be "normal" again and I should just accept my fate.

It was not a very positive encounter. Although she took me off the statin the APRN had prescribed < 2 weeks prior for my cholesterol (which over a dozen Drs just totally ignored for the past 5+ years). Did not mention my levels nor put me on any new tx or have any discussion on my high lipid levels - guess my time and her patience had run out. ...but the cramps and pain have improved A LOT! Ying/Yang - the whole deal is about balance....🙃

I am a reality and the whole truth kinda gal... guess that can translate to total PIA! I try to embrace it and share what I know with others that can relate.

I was advised to not eat fresh lettce or deli meats and wash fresh fruits well because of compromised immune system.

Hi Rebecca. I get the same rash whenever I’m sick. Usually on day 2 or 3 of having any kind of virus or vaccine. I mentioned it before to my hematologist oncologist and he told me to send a picture next time it happened and I did and he never said anything. I had another dr tell me that it was just a viral rash -like it happens to everyone but I never met anyone that gets a rash this bad anytime they have a virus so I was wondering if it was a lymphoma thing. My white blood counts are always around 1.9 to 2.1 so I thought maybe my body is just overreacting to try to beat whatever I have and I get a rash. It can be frustrating and maybe drs just don’t have an answer or don’t think it’s important. It goes away on its own after a few days so maybe something I just need to get used to as part of a new normal

I seem to get itching and rashes frequently and yes sometimes I think it may be food related. Had what I think was a really long, strong reaction to my last COVID booster at the end of last year. For me dairy and processed stuff (chemicals) seem to pay more of a part. Believe you are 100% correct in that our lymphoma journey makes the body/immune system work much harder. Itching /rash is a very "minor" symptom Drs seem to choose not to take it seriously.

My onco(s) either totally ignore that symptom or tell me it has nothing to do with Lymphoma (that's all they care about). I finally pressed and they told me to talk to a dermatologist. PCP will only suggest OTC creams or anti-allergy pills. 1st dermatologist told me he thought the itching (particularly the scalp) was related to arthritis - and referred me to the Rheumatologist. The Rheumatologist said definitely it was not related to arthritis. New dermatologist was not concerned. He actually said out loud that he thought it was related to the lymphoma. I said that they consistently said no and blow it off. Then he said that they likely know this but can't do anything about it.... When I commented then they need to be honest and simply say that. Ignoring or making you feel the fool for mentioning ongoing issues (mentioned every single visit but they don't document it) is not the same as acknowledging the issue and then saying they don't really know why and don't really have a solution. (The MA in the room almost laughed at me saying this and verbally agreed with me.) The Dr said to try prescription creme and shampoo but forgot to input the order. It took me two weeks and 3 additional contacts to get the scripts. It helps a little but not fixing the problem.

In the scheme of things, I understand itching/rash is probably not life threatening/fatal - although a serious anaphylactic reaction can be fatal. It is just another thing that causes us different levels of distress which can affect sleep and take away from living our best lives. We know that it means something is off - but nobody feels the necessity to figure out what is causing the problem - at best they toss another pill or creme your way "to try".

Sorry you are experiencing this. I understand and feel your distress. Hope you get it figured out and resolved. (May I suggest a food/drink/med log as a place to start?)

Hugs!