[mplsterrapin]

Diagnosed after swollen spleen & kidney blockage

by mplsterrapin on Mon May 09, 2016 2:26 am

We've had a relatively long journey to get to the point where my husband is definitively diagnosed and responding to treatment and tentatively scheduled for an autologous stem cell transplant in July or August.

We saw a dumb doctor who denied his spleen was swollen two years ago, so we went about our lives, and 15 months ago when we were out of the country, he became seriously ill. When we came back, I took him straight to the (different) doctor, and he was hospitalized for emergency surgery to remove a complete blockage in his kidney. During the CT scan, they realized that not only was his kidney swollen to twice its size, his spleen was drastically enlarged and pressing on the kidney as well. They could not find the cause at that time (although they suspected cancer), but it remained enlarged and was endangering him, so he had surgery to remove that last July. It was over ten times the size of a normal spleen, and the doctors said they had not seen anything like it.

The cause was not immediately apparent, and we spent many months with endless testing, but he was finally diagnosed with multiple myeloma. In fall 2015 he tried a couple of months of a regimen of Velcade, dexamethasone, and Cytoxan, but had zero response, and in fact the balance of his blood cells spiraled out of control. His white blood cells were crazy high (I think 160,000 when they're supposed to be 8-10,000), but his hemoglobin dropped so low he needed a blood transfusion.

Now he is on his second cycle of Revlimid, dexamethasone, and carfilzomib (Kyprolis) and responding so well and rapidly they think he will be ready for the autologous stem cell transplant after the third or fourth cycle. We have an intake appointment at the transplant center in two weeks.

It is immensely relieving to finally have a diagnosis and treatment plan after so long of wondering what was wrong with him, but of course it's a lot of stress to wonder how the transplant will affect our children (a 20 year-old and a 7 year-old), our finances, and our life in general. Unfortunately we don't have any family to support us, but hopefully our friends will at least be able to help with childcare for the younger one. I just hope that after he goes through all the unpleasantness of chemo and transplant, we are lucky enough to have him be one of the people who gets a long period of complete response.

I'm so glad this forum is here! I've been reading it for a while before officially joining, and it's really helpful to hear about people's personal experiences with things like the stem cell transplants. I'm sure it will be a great resource in the coming months as well.

[Valentine]

Re: Diagnosed after swollen spleen & kidney blockage

by Valentine on Wed May 11, 2016 3:05 am

Welcome to the family. The use of a site like this really does provide support as we move along.

I am nearing my fourth year and am third year post transplant. My advice is patience on the recovery and your path to the new normal. I'll share that watching the CBC numbers are important but can drive you crazy. The ups and downs of big changes and then "stable" have their own story.

How have the bone marrow biopsies looked? Getting the percent down was an important number for me.

Reflecting on you starting to find out about a stem cell transplant brings back a very important time for you.

Pax

[mplsterrapin]

Re: Diagnosed after swollen spleen & kidney blockage

by mplsterrapin on Tue May 17, 2016 2:54 pm

Thanks for your reply, and the advice about not obsessing over numbers. That is exactly the kind of thing I would do!

We do not know how the percentage has changed since starting successful treatment because he hasn't had a bone marrow biopsy since before this regimen, but the blood tests suggest that the next biopsy will show marked improvement.

We have an intake appointment next week at the transplant center, and our oncologist said they will be the ones to schedule the next biopsy since in preparation for arranging the transplant.

I hope it shows good news!