My check up yesterday, I knew would be with assistant, I met 1 time prior and tried not to make judgment. Yesterday I asked pointed questions! I couldn't get an answer!!!! Agh! I asked "what is the name of my leukemia?" She's scanning my chart online... ummm I don't know, it doesn't say. Wow I say. The initial blood work said CD5 small B cell leukemia. She then says "yeah, yeah it says that". Then I asked "Is that the name then?" She said "Um I don't know" I said OK then what's the name of… read more
Thank you
I have had no hodgkins lymphoma for over 9 months and receive chemotherapy every three weeks weeks.
So true Pat…Such good words of advice which I will take on board. Xxx
I was just diagnosed a week ago and don't meet with my doctor to discuss next steps until after the new year. He mentioned possibly doing "watch and wait" method and I've read a lot that backs that up, which really surprises me. Why would you wait until things got worse to pursue any type of treatment?
For some types of blood cancer there's no evidence that early treatment, when you have no symptoms, improves outcomes. Instead, doctors recommend saving treatment for later, when it will have the best… read more
Hello Group - My name is Pam, 63 year old retired nurse. I just finished 6 months of Bendemustine/Rituxamab (BR) treatment for follicular lymphoma stage 4. The majority of providers are recommending a 2 year - every 2 month infusion of Rituxamab. I've also heard some LLS physicians state they no longer use this protocol due to weakening of the immune system - with COVID and all still active would increase our chances of getting it. Anyone have advise/opinion on this? I personally don't feel… read more
Can anyone give me an estimate? Husband was approved for 70% assistance/discount through cancer center but they still can’t give an estimate or what we’re taking 70% off of??
Rebecca3, I agree with you about lifting the veil of secrecy.
Ex. My son is immune suppressed bcs of medication he takes for a rare chronic disease and we are cautious but not overprotective of his environment. I assume it is the same for ppl with NHL watch and wait? Or are there additional precautions against infection, beyond the normal precautions, specifically related to cancer? Thanks
I find the watch and wait so hard. For me is like playing with a loaded gun, the problem is that you do not know really what the caliber is going to be. I just finished treatment for a FL Grade 2… read more
I found out I had follicular lymphoma in my right groin in February 2021. In Dec 2021, I had a CT scan and found a small lymph in my right armpit. I am on watch & wait with no symptoms. I had a mammogram last week& need to do a follow up on the right breast. I am nervous. what others did watch and wait and at what point was it changed to treatment. My doc said that I wouldn't need chemo, and if the groin lymph node got bigger, they would do radiation. But not sure if that changes with lymph… read more
Briefly…I had follicular lymphoma and went on watch and wait until it transformed into double expressor diffused large B cell lymphoma and then I started chemo and reached remission. Two years later… read more
Update on our end - they've diagnosed my husband with PTLD again (first one was in 2105), stage 3a, and we started Rituximab plus chemo with the plan to do a bone marrow transplant. He just finished… read more
NH LDBCL was my 2 diagnosis, the RCHOP 21 wasn’t fun
A lot of adjustments…. Learning to sleep w a port
I had extreme dry mouth no matter how much h20 I drank it never went away. I was… read more
I feel some low grade fatigue pretty often though. Occasional bone pain in my upper arms
Some light headedness when I stand up too quickly. I haven’t had a night sweat experience in over two months.
Overall, I think that my body is doing pretty well.
I have not had any chemo or radiation treatments. I live in Loreto, Baja South, Mexico and the nearest treatment center is in La Paz; 4 hours away.
I really don’t want to move back home to Colorado for treatment.
I would appreciate any… read more
Hi, I am thinking to go back to Baja because this bad news.😑 I was wondering where can be watched on those areas. I need more support.