[Lev]

Velcade - when to stop it, or go down in dose?

by Lev on Mon Sep 15, 2014 12:14 am

Greetings to everybody,

Is there a good general norm / definition to describe / classify the level of neuropathy side effects of Velcade?

And is there a norm / general practice for when to stop giving Velcade or to change dosage?

What is the newest knowledge / regimen here?

My reason for asking

I am under initial treatment, just finished the second cycle of 3 x 3 weeks of initial treatments with cyclophosphamide / Velcade / dexamethasone (CyBorD / VCD) (to be followed by stem cell stimulation, harvest, high dose chemo and then stem cell transplantation).

Going to start the last 3 weeks of VCD on Friday (treatment Friday / Monday, Friday / Monday with VCD on the Fridays and Velcade on Mondays). The last week is a pause.

After 6 weeks out of the total of 9 weeks of initial treatment, I am feeling fine. No other problems at all, working full time etc. etc. But I do have minor side effects from Velcade.

The Velcade is given in the stomach area. The physicians / nurses want to know about all side effects and are ready to go down on dosage or stop Velcade if needed.

After the first week of the 2nd cycle, I got a feeling as if having silicone padding around the toes, and under the front of the feet. Not an unpleasant feeling , just when it began I had the feeling of a pin in my right heel, this when take way after 2-4 hours.

Now when I am going to start the final 3 week cycle of VCD, the effect is slightly, just slightly, more profound. Also a feeling of tenderness. To say "pain" would be an exaggeration - tenderness / slight pain is more correct. Left foot and heel.

I am not sure about the tenderness, it could also be a result of tensions from my reaction to the Velcade cushions around the foot.

No symptoms at hands/fingers.

My motivation is to go ahead. I would not like to have this tenderness for the rest of my life, but if it's temporarily for some time to come, no problem.

But I want to be able to describe the side effects as precisely as possible without too much bias towards either stopping / going down on dosage or sailing full sails ahead. Although the full speed ahead is of course my goal.

Meeting the chief physician on Wednesday to plan the last VCD treatment after blood tests etc.

I also read this thread: "Neuropathy and numbness from Velcade - how common?" (started June 12, 2014).

Yes, as my grammar and spelling may indicate, English is a second language form me.

[Dr. James Hoffman]

Re: Velcade - when to stop it, or go down in dose?

by Dr. James Hoffman on Mon Sep 15, 2014 10:11 am

This is certainly a very good, and practical, question. The answer is somewhat imprecise. There are no absolute rules to guide practice as to when to stop or dose reduce Velcade. However, a few points can be made:

1. The neuropathy of Velcade is generally a reversible one (unlike the neuropathy assoc­i­ated with some other chemotherapy drugs, like vincristine). It's not always completely reversible, but usually it does get better when the drug is stopped.
2. 'Painful' neuropathy is generally a reason to stop or dose reduce.
3. Schedule modifications can be helpful. In your case, you are already getting the Velcade sub­cu­taneously, which is appropriate to mitigate against neuropathy. Your doctor might consider changing your schedule to once weekly for 4 out of 5 weeks, instead of twice weekly. This is a similarly effective way to treat, with less neuropathy. As a matter of practice, I almost always use this weekly schedule.

I think you are doing a great job partnering in your care with your medical team by paying close attention to your body and communicating well. It certainly sounds to me that Velcade can and should be continued, as it is a very important drug in this disease.

The exact point at which the drug should be dose reduced or stopped is hard to define, but I generally try to push a little bit as long as the patient's quality of life is not being clearly impacted.

Hope this helps. Good luck to you as you continue your treatments.

[Lev]

Re: Velcade - when to stop it, or go down in dose?

by Lev on Mon Sep 15, 2014 4:07 pm

Once again: thanks for clear, understandable and useful answers.

Best regards

Lev

[Lev]

Re: Velcade - when to stop it, or go down in dose?

by Lev on Mon Sep 29, 2014 9:34 pm

Hi Everybody,

Thanks to Dr. Hoffman for the answer and clarifications. This was really needed while I was in the middle of the process.

Got the last Velcade injection yesterday. Summing up on my personal experience with this important part of the treatment.

Cycle 1: No symptoms,

Cycle 2: After the first two Friday / Monday injections I started getting needles in my right heel. Initially a bit more than I could have lived with, a little bit painful. It then expanded to the entire foot, but became less concentrated. Still not nice. The day after it came to the left food, a little stitchy but primarily as silicone pads around the soft tread areas at the front of the foot (the fatter area where you tread down/put your weight.

Cycle 2 second two injections. Got full treatment while the hospital discussed reduction. The bad symptoms in the right food attacked first, disappeared, can now just be felt as a slight reminiscent.

Cycle 3 first two injections. A little increase in symptoms, the padding, making me walk a little uneasy at home, but able to camouflage at work where I want to look well. Some pain in the feet and leg muscles, probably due to compensation for bad feeling of ground contact.

Cycle 3 last two injections. The nurse and doctor expected the symptoms to remain or maybe even worsen. But they actually are weakening. Only some padding around left front foot.
Got the very last Velcade yesterday.

Once again, everybody has their own set of symptoms, and I did not have to go down in dose. Interesting, though,that the symptoms became weaker at the most intensive part of the 3*3 weeks.

The Velcade was a part of this treatment:

3 or 4 x 3 week initial treatments with cyclophosphamide / Velcade / dexamethasone (CyBorD / VCD), stem cell stimulation, harvest, high dose chemo and then stem cell transplantation.

Due to good results, the fourth cycle is canceled, moving on!