[JWOE43]

JWOE43's CyBorD journey

by JWOE43 on Fri Aug 24, 2018 1:25 pm

Good afternoon everyone,

Today will mark my first treatment in Cycle 2 of cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD) and I thought I would share how it is going so far as far as side effects go. I have labs today before treatment, so I do not know how effective it has been through the 1st 4 treatments over the past 4 weeks. I started with the following after my bone marrow biopsy:

Viability: 73%

Percent of plasma cells (bright CD38+ events)
CD19: 69%
CD20: 0%
CD56: 54%
Kappa(cy): 46%
Lambda(cy): 44%
Kappa(cy):Lambda(cy)ratio: 1.06

The above is just for reference, as I know some will ask.

So far, here is what I have personally experienced with the treatment:

Acyclovir - 2 pills everyday - No side effects so far.

Protonoix (pantoprazole) - Been taking for almost 4 years now, and the only time I get any side effects is when I forgot to take it. This goes hand in hand with taking the dexamethasone, so I don't get acid reflux or heartburn from the dex.

I take dexamethasone on Mondays and Fridays. With that being said, it is a 40 mg dose (10 pills). This caused insomnia the 1st week, but since, I have been able to sleep better than before. It has caused my lower legs to swell, so I put them up at night and the swelling is down by morning. That being said, I also have to get up every hour or two to use the bathroom due to the swelling.

I have found that i don't really experience any neuropathy or pain until Thursday, when I am due the following day to take my dose again. Sometimes it is worse than others, so I have found that taking 500 mg of Tylenol (acetaminophen / paracetamol) or 400 mg of ibuproferen has helped with that.

On Fridays is when I also take cyclophosphamide (Cytoxan) and the Velcade (administered at the infusion center at oncology via an under the skin injection).

What I have experienced is by taking the cyclophosphamide and the dexamethasone in the early morning on Fridays is that I have to use the bathroom about every hour, and I can't wait, so I am now working from home on Fridays until my treatment is complete, as I need an open bathroom readily available all day in order to urinate. I am also now having to take the laxative Dulcolax (bisacodyl), as the treatment has caused constipation, and pretty severely at that.

I am finding that as the treatment goes on, I am feeling more tired on a daily basis, but that could be due to having to get up all the time at night to use the bathroom and not because the CyBorD regimen itself is causing me to be tired. Not sure, but either way, the medicine is causing the issue overall.

My oncologist and his team are watching the swelling in my legs at this point to make sure it doesn't get out of hand, but overall, I couldn't be more pleased with the treatment, and once I have more information as to my test results that I should be getting later today or next week, I will share that as well.

I hope that this information helps others who may be wondering what they may or may not experience when taking the CyBorD treatment. I have been very pleased that i have had no major side effects, like the nausea, vomiting, or diarrhea.

[Mike F]

Re: JWOE43's CyBorD journey

by Mike F on Mon Aug 27, 2018 11:05 am

Thanks for the update. It's encouraging.