[anna78]

(Agrressive?) relapse and not doing so well with therapy

by anna78 on Sun Jul 21, 2013 5:34 pm

Hello,

I’ve asked specific questions before, but I am hoping someone has some ideas the general situation. Once again, this is rather long, I apologize for that! Also for any grammar and spelling errors, English is not my first language.

My mom (60) was diagnosed in May 2012 (IgG 3103 mg/dl, myelomprotein 3177 mg/dl, bone marrow infiltration 40-50%, two broken rips, several (non-dangerous as the oncologist said) skull lesions, no kidney problems, no deletion of 17p, no translocation of IgH-locus), went through induction therapy right away (3 cycles of PAD) and had an autologous stem cell transplant in October. She achieved vgpr already with the induction therapy (IgG normal, bone marrow infiltration 10-20%) and also with the transplant (IgG 1042 mg/dl, myelomaprotein 394 mg/dl, LDH 200 U/l). The bone marrow infiltration was measured at 25-30% in December (two months after the transplant), which is why the oncologist suggest another transplant right away. My mom declined because she felt very weak still from the first one.

May this year, my mom (who had just started working again) started to feel rather fatigued and weak. Blood in early June tests showed levels well elevated above even the first diagnosis: IgG 7024 mg/dl, myelomprotein 6224 mg/dl, beta-2-microglobulin 6970 ug/l, LDH 495 U/l. In addition, hb was only at 7,4 and platelets at 10.000. X-rays done in April had shown no bone lesions. Kidney and liver number were a little elevated, but not much. Unfortunately I don't have the bone marrow infiltration numbers.

My mom started with 15mg Revlimid and weekly 40mg Dex on June 12 and is now midway through her second cycle. The oncologist plans to get new IgG etc. number after the third cycle, so we don’t know how well the therapy is working. One as I understand positive indicator is that LDH has gone done to normal levels (223 U/l on July 5). She has received several transfusions since June for the hb level, but since two weeks or so, it seemed to recover a little on its own. Plateletes have varied between 5000 and 31000 during the first cycle (up and down, several transfusions given) and then went up to 31000 two days after the first cycle and to 55000. They dropped back down to 33000 5 days into the second cycle and to 6000 8 days in. My mom always had a hb a little below normal, but never had any problems with platelets (not counting stem cell transplant, but they recovered nicely after that). Knock on wood, no problems with WBC so far.

So much for the numbers… At the moment, my mom is feeling fatigued, worn down and scared. Her oncologist told her he never would have guessed that the IgG etc. would go up so high so soon. Every time the platelets go down, she gets bruises on her body, which scare both her and me and make us very aware of the high risk of bleeding. From the numbers I posted above, it seems to me the Revlimid is doing its job pushing back the myeloma cells and allowing the marrow to start producing platelets again (numbers going up during break), but kills the off again during the cycle. I am also worried about increasing weakness and fatigue, I keep reading about how well people are doing with Revlimid, even working, my mom can hardly walk up and down the stairs at the moment. I hope some of that is due to the hydromorphone she discontinued last Thursday (taken for pain from face neuropathies) and some related complications, but I’m not sure.

Does anybody has any experience with fast relapse with high numbers like this? It seems most people relapse with slowly rising numbers. My hope is that since both induction therapy and sct managed to fight off the multiple myeloma, the Revlimid will as well. I am scared though that the side effects will keep piling up or that the platelets will continue to be so dangerously low and that we might not be able to continue treatment.

Any thoughts and ideas greatly appreciated!