[truckerken65]

Ninlaro, cyclophosphamide & dex - what to expect?

by truckerken65 on Mon May 07, 2018 10:29 pm

Hi everyone,

My name is Ken. I was diagnosed with smoldering myeloma about 4 to 5 years ago. Two months ago I developed a pain in my left arm. Three weeks later I had it checked out. It ended up being a tumor on my arm. I had it removed, but now they are saying I have multiple myeloma.

I still haven't gotten the biopsy report from what they took off my arm, but they want to start radiation on my arm.

The doctor put me on Ninlaro (ixazomib), cyclophosphamide, and dexamethasone 4 mg, and acyclovir for shingles. I have to take 6 dexamethasone pills the first day, 6 more the 8th day, and 6 more on the 15th day. Same with the cyclophosphamide. The Ninlaro is taken once a week for 3 weeks.

What can I expect with this treatment? I haven't started it yet. l'm kinda afraid of the dexamethasone after reading all the horror stories about it.

[Mike F]

Re: Ninlaro, cyclophosphamide & dex - what to expect?

by Mike F on Tue May 08, 2018 10:47 am

Hi Ken -

Sorry to hear that things have progressed to this point. I haven't taken Ninlaro or cyclo­phos­phamide, so I can't comment on them, but I do have plenty of experience with the dexamethasone. It's an evil b**ch of a drug, but it's also manageable. The up/down swings in energy and (for many) in mood can be a problem, but I think most people find a way to minimize the issues.

After reading about what others here had to say, I made sure to take the dex right before I went to bed. This would allow me at least four or five hours of sleep before the speediness kicked in. The following night, I'd use a little medical marijuana to get myself to sleep and that would usually get me (again) four or five hours. The next couple of days, I'd be dragging, but I'd make it through the day. (I kept working full time through all of it.) I'd get a good day after that, just in time to take more dex that evening.

So for me, although it was a huge pain in the rear end, I found it to be tolerable. In the long term, the benefits definitely outweighed the temporary and moderate decrease in quality of life. As you've probably noticed from reading about this stuff, everyone's response differs a bit, so you may react differently from me. I think the best you can do is to try to work with the side effects and to be creative in how you deal with them.

[Christa's Mom]

Re: Ninlaro, cyclophosphamide & dex - what to expect?

by Christa's Mom on Tue May 08, 2018 6:32 pm

Hi Ken,

You are taking a pretty hefty dose of dexamethasone. EJ started out on a high dose, too, but after a while they dropped him down to a much lower dose (I can't remember the specifics.) You may ask your doctor if he plans to drop your dose at some point.

EJ took the dex just as he was getting into bed at night, and was able to sleep through the night. The next night was a little rough, but it would get better as the week wore on.

Good luck.

Lyn

[Anon25]

Re: Ninlaro, cyclophosphamide & dex - what to expect?

by Anon25 on Tue May 08, 2018 9:21 pm

Hi Ken,

I’m in a clinical trial utilizing Ninlaro, cyclo­phos­phamide, and dexa­metha­sone. They started out with 4 mg Ninlaro once a week on days 1, 8 and 15, with the next week off. The cyclo­phos­phamide dose is based on the patient's weight and follows the same schedule. The dex is 40 mg weekly. I’m also on acylovir and Bactrim (sulfamethoxazole and trimethoprim) as preventatives for shingles and pneumonia (bacterial), respectively. They also provided 1 mg granisetron tablets for nausea.

I started the trial in July 2017. A few items:

• At 4 mg Ninlaro, I developed a skin rash, so the dose was reduced to 3 mg. The rash went away.
• There are some instances of diarrhea and constipation, but Revlimid produced worse diarrhea in my case.
• The treatment seems to have made the peripheral neuropathy in my feet a bit worse.
• The dex did increase my appetite (if you're up all night, might as well eat). With the weight gain the dosage of cyclophosphamide was increased slightly.
• A good side effect of the dex (I would prefer not being on it at all) is, it really helps with many aches and pains.
• I did forget the granisetron one time. Ninlaro can and does cause vomiting.
• The Ninlaro also seems to have lowered my blood pressure. I was on a fairly low dose of blood pressure medicine, my PCP (primary care physician) bumped it down more.

My initial diagnosis was in 2011. I have a lot of bone involvement. The first sentence in the nar­ra­tive for a CT scan going from the apex through the knees (before treatment in 2011) reads “In­num­erable lytic lesions throughout the entire visualized axial skeleton.” it then goes on to detail the lesions observed inside as well as outside the axial skeleton (the axial skeleton includes 80 bones of the skeleton) as well as the larger more worrisome lesions. A PET/CT scan a few months later the same year uses similar wording, "with innumerable lucencies throughout the visual­ized skeleton.”

I had a stem cell transplant in 2012. About 24 months months later I experienced my first re­lapse. Initially I thought I had a pulled muscle in the lower back, but this seemed to be getting worse with time. It turns out a tumor had broken through the cortex of the vertebral body and extended into the central spinal canal, where it was compressing the nerve root. I was actually losing use of my left leg and experiencing a fair bit of referred pain in the back and along the knee. Radiation shrunk the tumor and I went back on Revlimid and dex.

The reason I mention this is the pain along the knee was an occasional sharp pulse. I have recently experienced a similar, very infrequent pulse of pain a few different places. Listed as one of the rare risks (rare defined as events occurring less than 2 -3 % of the time in Ninlaro users) are effects on the nervous system.

Also as a note, I had A PET/CT scan last week. Some new lytic lesions were found, none on the the spine. I would prefer no new lesions. I’m meeting with the provider next week.

Best regards