[Nanjeanne]

Relapse hit us in what seems like overnight

by Nanjeanne on Wed Nov 21, 2018 6:53 pm

My husband just started on the Darzalex journey. When he was first diagnosed nearly 5 years ago, it was thru a simple blood test. He never had bone pain or particularly high numbers. But he had two bone lesions, so he did Revlimid, Velcade, and dexamethasone (RVD) and a stem cell transplant. Although he never achieved complete remission, he was stable for so long and felt so good we almost forgot about what a difficult disease this is.

Well no more! His numbers started changing about 3 months ago, but nothing outrageous. Then 2 months ago he complained of a nagging backache or his area around his “back wallet” hurting. Thought it was more muscle until November 1, when we had to go to emergency room. He had so much pain and difficulty walking. And blood drawn then showed all the good numbers tanking and all the bad numbers rising! He never had a low hemoglobin, but boy did he now. MRI showed compression fracture, but MRI of hip and pelvis showed almost complete myeloma in marrow and numerous lesions!

What an insidious disease. Late September we were driving through the Piemonte area of Italy, drinking wine and eating glorious food, and walking the beautiful towns. That sneaky myeloma must have been setting up shop in his marrow for months not reflecting in his numbers.

He just finished his 3rd Darzalex infusion and is also taking 2 mg Pomalyst (started at 2 because Revlimid had taken a toll on his WBC). Also restarted Zometa (had gone to twice a year) because of high calcium. And dexamethasone, which we hate but are learning to live with again.

He had severe diarrhea but no tests show any infection about two days after Zometa. Never had that reaction to Zometa, and the doctor didn’t think it was a side effect. She stopped the Pomalyst for a few days while we try to get this under control. Hoping it’s not a side effect of Pomalyst as he really wants to hit this hard. He never had diarrhea with Revlimid. So we are hoping it’s a one-off and won’t recur.

Met with orthopedic surgeon today who said the nerves around the fracture don’t look affected by the fracture and he checked his leg movement and femur, etc. didn’t think his pain was coming from fracture and recommended we do systemic treatment and radiation and then see if pain abates. Thinks it’s very likely and a better plan to focus on those treatments first. So next week we meet with radiation oncologist about radiation to hopefully relieve the pain he has now. Our doctor prefers not doing radiation and treatment at the same time, but our specialist thinks it might be appropriate given my husband’s current situation.

We are staying optimistic that the Darzalex, Pomalyst, and dexamethasone plus radiation will kick the myeloma to the curb and give us more time to enjoy more good Italian wine and food!

[Mike F]

Re: Relapse hit us in what seems like overnight

by Mike F on Mon Nov 26, 2018 1:31 pm

Really sorry to hear this, Nanjeanne. I very much hope that this latest round of treatment gets every­thing under control again and that you and your husband will have further opportunities to enjoy good food and wine in wonderful locations.

[Nanjeanne]

Re: Relapse hit us in what seems like overnight

by Nanjeanne on Mon Nov 26, 2018 2:33 pm

Thanks Mike.

We meet the radiation oncologist tomorrow. My husband has tremendous spirit. I know we can fight back this cancer again if he could just get rid of the pain - and were able to walk comfortably.

Trying to stay positive but so hard to see him in pain. Hopefully we don't have to stop the Darzalex-Pomalyst-dex in order to do radiation. Hoping we can try to do both at the same time as long as possible. Will know more after tomorrow.

Keep on trucking, all of us!

[Nanjeanne]

Re: Relapse hit us in what seems like overnight

by Nanjeanne on Sat Dec 01, 2018 10:06 am

After one month on Darzalex and about 2 1/2 weeks of Pomalyst, we had our monthly full blood work done. The good news is the treatment appears to be working!

M-spike went from 1.9 to 1.2 g/dl (19 to 12 g/l)
Kappa serum free light chain level went from 3.73 to 0.20.

This is the first time in ages numbers are trending, down so we were happy to see it.

Hemoglobin went from low of 8.8 to 9.6, and hematocrit went from low of 26.9 to now 28.8. All still much lower than he has usually been before this quick drop, but moving in right direction.

He is still in a lot of pain and still can’t really walk easily, but he starts radiation in a week on his hip area and we are hopeful that will alleviate the pain a lot along with the continuing systemic treat­ment.

Fingers crossed!

[Rssutherland]

Re: Relapse hit us in what seems like overnight

by Rssutherland on Mon Jun 24, 2019 2:55 pm

Sounds familiar. I was diagnosed in early 2010. 15 weeks of Velcade worked. No treatment for over 4 years. Then Revlimid, which worked ok, but ran out of steam. Ninlaro was next, and it worked very well. But swelling of my hands ended that. I then had Darzalex by itself for one cycle before they added Pomalyst and Velcade with dex. Worked well. Transplant in December 2018. Now on maintenance with Pomalyst, Velcade, and Darzalex. No dex. So far so good. What was familiar was how indolent the disease was for years. But 2018 included 2 separate rounds of radiation, several fractures of my ribs, and a fracture of the collarbone.