Advice please

cath3203

This is the first time I have posted so I'll explain a little about myself.

My husband has for many years had Chonic Lymphocytic Leukaemia, which was until september of this year in remission. After feeling very unwell and losing a great deal of weight, the hospital finally gave Philip a CT Scan and found he had a very enlarged node in his abdoman and an enlarged spleen and liver.
The hospital specialist has said that his CLL has undergone a Richter's Transformation into lymphoma and agressive treatment should start straight away. In October he had his first round of R-CHOP Chemo, and within a week was admitted to ICU with Septicaemia, thankfully he made a full recovery but has also been hospitalised with each chemo treatment since (3 rounds)

Philip has just had his 4th treatment at a reduced level due to high calcium levels in his blood, and generally feeling very weak. He has also realised that his lower lip and chin as gone completely numb making it difficult to eat and drink, which does not help the weight lose approx 5 stone to date. My question is how do you know if treatment is working or not, because its Christmas I am finding it hard to talk to the people in charge of Philip's case, and cannot get any real answers, They do not even seem to be concerned with his lip and chin at all.
Any advice or help would be apprecieted.
Cathy.

Budski1279

Hi Cath, My name is Bud and one year ago I was told I also had agressive lymphoma. I had three sessions of R-Chop and was re-tested (cat scan,Pet scan) and I was cancer free thank you God. Then I had three more sessions after that. I have had two more check-up since and pray before each one. I too had numbness in all of my fingers and some of my toes and cramps all of the time. It is from the vincristine I was told. I am happy to say that all of the numbness is gone today. Does his DR plan to re-stage him soon? Hope this helps. Keep the faith, Bud

winthefight

Hello Cath, I am also undergoing R-Chop. I have gone through 5 of the scheduled 8 sessions. I am experiencing a tingling/numbness in my fingers. I also experienced the loss of strength in one of my hands. The strength eventually came back after a couple of rounds of chemo treatments. But as for speaking to someone about your concerns, you have every right to ask questions. Perhaps going to the Administrator to voice your concerns may get things moving in the doctor's office. Have your list of questions ready. Document or (with his/her permission) record the responses. Have you tried contacting the Cancer Center of America? When I was first diagnoses, they were the first I contacted. They helped me a lot.

Laura56

New here. I have NHL and went thru 6 rounds of RCHOP this summer. Had the numbness too, toes, fingers and the lip/chin. All has gone away except toes. They assure me it will. All I can say is ask questions, I find they don't tell you much. I was thinking I was getting my port out 2 months after I was done with treatment and the next think I know is I am having Rituxin every 3mos for a year...... had a pet scan in july all looked well, had another in Oct and there was a spot on my spleen again..... I plan to ask questions when I see the Dr again. I was in shock and all I heard was spot,spleen,rituxin.
Laura

Racht

Hi Cathy, I am sorry that you and your husband are going through so much. I am a lymphoma survivor and since miraculously surviving 6 cycles of chemo and 20 cycles of radiation, have made it my business to learn about what I can do to get on the road to whole health.
The best tools your husband could use are his fork and knife! and since he has the problem with numbness, I recommend investing in an excellent juicer (a masticating type). I also recommend you get him drinking coconut water. (see onenaturalexperience.com for more info) coconut water is actually used in some countries even today, as a blood transfusion because it is 50% identical to human blood. It is not expensive and it is naturally antiviral, antifungal, and perfect balance of electrolytes. I drink it regularly and it has helped me tremendously with dry mouth( from radiation) and my platelets were mysteriously dropping (long after treatment). They were 10,000 stronger when I went back for my last check up at the cancer center. I can't say enough about how beneficial adopting a whole foods, plant based diet has done for me. It's a shame that it isn't made as big a deal as it should be...you will both be in my prayers.

taichung0812

I had CLL/SLL since 2014, no treatment and no symptoms till June of 2021 (high white blood count and low platelet count gradually). Excellent response after taking Ibrutinib starting in June of 2021 but diagnosed with Richter's Transformation (RS) in Nov of 2021. Started a regimen from my oncologist (not R-CHOP) right away. Both CLL and RS went into remission in Jan of 2022 and still in remission. RS is very aggressive and fatal. I would like to find or start a RS support group so we can share information and support each other.

Hope to get response soon.

Betty (age 77)

PBL

Hi Betty,

Sorry to read your history, but glad you are currently in remission despite that dread event.

If I may, I'll offer a couple of practical remarks to assist you in your endeavour:

• this is an old thread that has been dormant for a long time. I would suggest starting your own thread with a very explicit - even catchy - title such as "Calling on all Richter's Transformation of CLL survivors";
• CLL being on the Leukemia side of the CLL/SLL coin, you may want to duplicate that new thread in the "Leukemia" Discussion Board;
• in case you haven't tried that yet - and my apologies if you have - you may want to type "richter's transformation support group" in your search engine and see what that yields.

Also, the CLL Society (I see they have monthly support meetings) might be a good place to start, and I would be surprised if Facebook didn't have a CLL private group that you may want to join just to see if they have any Richter's subgroup.

I hope this helps.

Kind regards,

PBL