[mrozdav]

Re: K_Shash's RVD induction therapy experience

by mrozdav on Fri Aug 07, 2015 10:42 am

K_Shash, This was all very interesting and so thank you.

I just want to say something about your heavy eyelid problem. I did not write before because I was not sure that what I had to add was relevant. But, here goes.

Even before I started treatment I knew that I had incipient cataracts which my ophthalmologist was merely monitoring on a yearly basis. Once I started myeloma treatment a year ago, however, I noticed rapid changes in my eyesight (as well as changes in my hearing). It is difficult for anyone to establish whether these changes are attributable to advancing age or to the RVd treatment. However, it is generally accepted that these drugs do affect both the eyes and the ears.

What I have noticed in the last few months, but only on a sporadic basis and usually when I feel very tired, is a sensation in both eyes as if I have tiny grains of rice under my eyelids. The feeling goes away when I close and/or rub my eyes. Perhaps this is what you experience and call "heavy eyelids?" When I start feeling the sensation it is a signal that it is time to go to sleep. I also think that it may have something to do with eye dryness. I do not recall feeling such sensations prior to starting the drugs.

This all is probably entirely off the mark, but I thought I would mention it anyway. So good to hear nice news about your progress.

[K_Shash]

Re: K_Shash's RVD induction therapy experience

by K_Shash on Fri Aug 07, 2015 4:43 pm

Hi mrozdav,

I think your 'gritty eyelids' syndrome may be related but a little different in that I do not have any cataract problem. I am monitored for border line Glaucoma, however.

It was rather surprising that I had the longest lasting "Heavy Eyelid"/ Drooping Eyelids problem a whole week from last Velcade shot and no such problem since. I have not felt any rough grains under my eyes. I did try rubbing my eyes to see if I could get the eyelid muscles massaged but had no success. I think I started having this problem only in the last two cycles (after 6 cycles of RVD) and I didn't even discuss it with my Oncologist in the July 29 appointment. This sensation of needing extra effort to keep the eyelids open usually lasted only 10 minutes till the last week.

I have also been experiencing a lot of upper body soreness, mainly in the shoulders, only when I did my routine stretches or while changing shirts. That soreness, too, seems to be Velcade related since it was quite painful during the Off week of the Revlimid. I had that till a couple of days ago and I did not feel any soreness today. I think 8 cycles of Velcade is about all my body could take. It was quite scary to read about what to do IF a Health Professional accidentally comes in contact with Velcade. A drug that can cause a pretty severe burn (if the Air Bubble Technique isn't used) certainly seems to work well against the malignant plasma cells but is toxic and may cause these problems, slightly different manifestations for different patients. I have had a single episode of the Revlimid Rash ( on the 18th day of the 21 Days ON cycle), only once did I feel a slight tingling in my fingers (peripheral neuropathy) for a few minutes but I have had the sleepless nights every time after the Dex and a serious fatigue and drowsiness 2 or 3 days after Dex Velcade.. as the effect of the Dex wore off. This 'heavy eyelid' problem started bothering me only 4-6 weeks ago and progressively got worse.

My taste seems to be returning to normal, just a little sign since I found some food salty yesterday, for the first time in several months and all the while I had to add salt to my food during this treatment. It was bit tricky because I had to add salt to my food a bit at a time otherwise it would taste from bland to too salty with just a few extra grains. I could not be sure which of the three medications, Revlimid, Velcade or Dex are causing which specific side effect and I can only chronicle the developments in the next few weeks, the changes that would be attributed to dropping the Velcade.

I only came across 'swelling around the eyes' as a seldom reported side effect of Velcade in all the literature I read on line.

Thanks for sharing your experience with the Myeloma Beacon Community.

I will certainly include any recurrence of this problem in the future because that would clearly show that Velcade wasn't the culprit at all.

K_Shash

[mikeb]

Re: K_Shash's RVD induction therapy experience

by mikeb on Fri Aug 07, 2015 11:44 pm

Congratulations on your latest FLC test results, K-Shash! I'm happy to hear that all three values are in the normal range now.

Thanks a whole lot for all of your posts during your induction phase. I'm sure that the chronicle of your experiences is helpful to many new patients. I also am sure that it took you a lot of time to write the posts, and that you did it many times when you didn't feel your best. So, on behalf of myself and others in the Myeloma Beacon community - thanks for your tremendous contributions over the past 8 months or so.

I'm so happy that you've achieved such a good response to the RVD induction therapy. Best wishes for continued success with your maintenance treatment.

I'll be reading your posts and rooting for you to have a very, very long remission!

Mike

[loveparis]

Re: K_Shash's RVD induction therapy experience

by loveparis on Thu Sep 10, 2015 4:29 pm

I will also be starting treatment soon. Revlimid / Velcade / dex triple play! I'm concerned about how I will react mostly with the dex. I don't want to bite the heads off everyone around me, and I have told them about some of the mood swings that may occur. I'm nervous, but ready to get the ball rolling and hopeful for a good and quick response.

My oncologist said I didn't need to think about SCT yet, not that it wasn't an option, but one step at a time. I'm open to whatever works best and has the longest lasting results.

Any comments or thoughts or helpful hints while on this chemical journey are welcomed. Wish me luck.

[K_Shash]

Re: K_Shash's RVD induction therapy experience

by K_Shash on Thu Sep 10, 2015 9:13 pm

Hello Loveparis,

Not knowing the exact details of your tests and the risk factors, etc. I will summarize my ex­per­ience and conclusions (opinions based on my induction phase treatment):

Tolerance: A lot depends on the prescribed dosed. Velcade shots are based on a standard formula. No guesswork there. Just make sure the nurses use the "air bubble technique" to avoid the Velcade contact with the outer skin. There are many posts about this on our forum. I am assuming you'd be getting the subq shots.

The dex: I have been on 20 mg once a week, the day of the Velcade shot. I needed the dex to balance the drowsiness of the Velcade. And 20 mg is all I could tolerate. Many posts here that relate to starting with 40 mg and having to reduce it to about 20 mg after severe side effects.

Revlimid: I have been on 15 mg 21 days on 7 days off going on for the 10th cycle. Again, all I can tolerate, as I got the Revlimid rash just before or after the 21 day course of Revlimid; twice so far. That to me is an indication of what my body can tolerate. I am supposed to go on a smaller dose in the maintenance phase. My Velcade shots were stopped about 6 weeks ago and I am transitioning to the maintenance phase.

Everyone – their myeloma and their tolerance to these drugs – is different, and you need an oncologist who is willing to take the time to custom tailor these doses (like the Velcade has a formula) with that extra attention to detail. In my opinion, that can be hard to get in large institutions unless you insist on it. You don't want to develop any intolerance to these wonder drugs.

Best of luck on this Chemical Journey, This treatment works.

K_Shash