HEllO everyone.I have recent;y completed Velcade injections and have lots of questions like how tired should I still feel and about appetite taste buds etc.If theres some one who can help love to hear from you.
I had 20 velcade injections prior to my SCT in 2012. Let me know what questions you have and I would be happy to answer them!
my taste buds really changed and I became really sick needing about ten weeks in hospital all told. Seemed to get hit with everything. The problem is never really found out to what extent the Velcade and or amyloidosis had to do with my troubles. After I quit the injections I slowly became better and better. Would imagine everyone is different. Suggest you keep a diary if you haven't already. My amyloidosis effected numerous organs, gastric tract etc. Had to stop injections early. How were you during chemo?
My amyloidosis first hit my GI tract--that was about 6 years before diagnosis. Then, nails and hair followed by extreme fatigue. After that, my heart and bladder/kidneys. I had no damage to any of those when I was diagnosed so I was very lucky.
Velcade bothered my GI tract the most as it often does. I had to keep to a very bland diet during chemo weeks--rice, crackers, toast, ginger ale. After about 3 days after each treatment (often when the next one was beginning), I would start to feel better. The week off went pretty well. The other side effect was fatigue but I was able to continue working throughout all of chemo but it was not really easy. After all of the rounds were done, I was pretty good until the SCT--then I got pretty sick after that for awhile. Other than the SCT, I never had to be admitted to the hospital so, again, I was lucky. I seem to tolerate velcade pretty well and it really does knock down my light chains pretty quickly and deeply.
I have kept a diary since 2006 when the symptoms all began--it chronicles many things that have happened to me.
How many injections did you get? Did it get you into remission? What are they planning to do next? How are you now?
thank you for your comments
I realise everybody is different and their experiences are personal and unique. What I am hoping for is some general perimeters in what I should be expecting now that my 16 rounds of Velcade has finished, (3 weeks ago)
Q1 How long should it be till I expect my appetite to increase to say half of what it was before At present I am eating breakfast cereal (normal serve) about twice a day, plus juice, eggs, very bland
Q2 My taste buds are still not functioning and most things only taste remotely like they used to
Q3 I am still very very tired and have little energy Should I expect it to take weeks or months before it improves
Q4 I have swelling in my legs (due to fluid) with the light chains being affected by the Velcade, should I expect improvement in this regard
I was working on a 1% per day improvement, is this too ambitious
At present my capacity to walk is severely inhibited
In answer to your query, I have not had the final results of the blood tests, due in a few weeks. Hopefully they will say I am in remission and then develop a plan for future , whatever that is.
I am feeling better than last week and have more energy, but still weak,
I have kept a diary, it is most beneficial
Thank you for your concern and information
Good to communicate with people who have gone through this.
My appetite got progressively better. I finished velcade in late October and the appetite was pretty normal by Thanksgiving. Your problem could be the other issues you have been dealing with that placed you into the hospital. I did not have those severe complications. My taste buds were pretty much on the same track as the appetite--I believe they are very tied together. When I had the SCT, my taste was very bad for about six weeks after the transplant and eating was difficult due to that and to the nausea. That took about 7 weeks to subside.
My energy level gradually came back but, again, that was hit more when I had the SCT in December which wold have been two months after velcade ended. My energy level is about 75-80% of where it used to be so I don't believe it will be better than this now. Of course, I was extremely high energy before I got sick-I usually worked a 15-16 hour day seven days a week and slept about 5 hours per night. I was like that all of my life. I can't do that at all now. I sleep 8-9 hours per day and still work full time but those high energy days are gone. My doctor says that I don't like being a "normal" human being. I do believe your energy level will improve but it won't go back to where it was most likely. You will have a new normal but it will be good. If you have other complications happening, that will mess with your energy level, too. You have to make sure you get enough sleep each day---it is imperative.
I had so much fluid retention when I was on the dex during velcade that they put me on lasix--it helped tremendously. I am still on it--once each day as I tend to retain a little bit of fluid still. I was off for about 10 days during the SCT and even then, my doctor allowed me to go back on it as I was retaining fluid beyond belief. I don't have that problem now.
I believe you will feel better each week--patience is essential and that is quite hard some times. I am not happy with the way amyloidosis has changed my life--I have to make accommodations in the past years. But, I have to say that my quality of life is pretty good still and I do enjoy each day. I don't feel sick at all right now and being a little tired is just something to get used to.
Please continue to let me know how you are doing. I truly understand what you are experiencing. It does get better.
guess we have 2 mikes on here just to add a bit of confusion but it is all legal. The questions about how long after velcade will taste and fatigue improve? Suppose it depends on the person etc. In my case I believe it was a number of months afterwards that things became noticeable better. It has been quite complicated as I have had quite a bout of depression. Don't believe in doing it the easy way I suppose. In any event all this has sure been a life changing experience. Being an optimist I know although it's been quite a long battle things will be good. Do have steady although slow improvement. As for the tastebuds do keep trying different things. Even before amyloidosis I have had quite a number of issues with eating