CancerCompass message board discussion started by connie1 on 7/15/2008 http://www.cancercompass.com/message-board/message/all,26071,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed in October 05 went thru a Stem Cell Transplant in April 06 then was ok until Sept. 07 when they started Rev. he had all kinds of problems since then .  Catarate Surgery which they say Steroids can cause them.   Blood Transfusions and just being completely wiped out.   They had to take him off of it in May because he wasn't working anymore.   They asked us in June what we wanted to do because his MM was coming up but wasn't to bad and we decided to take a rest period and they would monitor him monthly.   That was in June a couple weeks ago I had him in the ER with severe neck pain.   His blood had dropped so much we had yet another blood transfusion.   (He has had 3 in the past 6 months.)   They dismissed him after the pain was under control and went back to the doctor and he said that the MM had jumped up so high he needs to get started on Velcade and Doxil ASAP.   My husband is so depressed because he just wanted a few months this summer to enjoy things.   This treatment sounds worse than Rev. and he didn't tolerate it very well.    Please let me know what the real side effects are.    All the doctors will say is some people get along very well with it and others have problems.    Connie connie1 Tue, 15 Jul 2008 00:00:00 GMT Hi Connie,I'm currently on Velcade weekly and have been for quite a while. At first I received the Velcade 4 times in a two week period, but had the dose reduced and went to weekly injections because of side effects. Keep in mind that each person is different and may NOT experience the same side effects. Some don't have any. I currently experience anemia (low red blood counts), fatigue, diarrhea (which is pretty much under control with the use of aides) and peripheral neuropathy (numbness in hands & feet).  When I was on the higher dose, my platelets did drop but always returned back to normal during the two weeks off, as did my red blood counts.  I did not have nausea, which is possible.Velcade has been very successful for the treatment of MM.  It can keep people in remission, as well as put them in remission.  I like it better than the Revlimid, which has been discontinued for me at the moment.  You can find more information on line and at: www.multiplemyeloma.org as well as other sites.I see Dr. Barlogie at UAMS in Little Rock, who does a lot of research and is one of the best for MM.  He would not have put me on the Velcade unless he thought it would help.  My local oncologist agrees and has patients with MM on Velcade. I don't like the idea that the doctors are asking you what to do next. It sounds like they're playing a guessing game. Maybe trying to see an oncologist who specializes more in MM would be a good idea. Ask your doctor.I agree that your husband wants to take a break, but I would work on getting the MM under control first. Going through the chemo, transplants can be life-threatening (as was with me), and depressing but you have to look at the options ... live or ... . What about seeing a therapist to get through this period? For both of you. There is nothing wrong with that. Just remember that the longer we can all keep ourselves in remission or keep the MM under control, the better chance we have that better treatments will come along or a cure.  I keep telling myself if I can just hang in there and put up with the side effects, that day will come.Connie, I hope this helps you. Keep us updated.Lois LoisA Tue, 15 Jul 2008 00:00:00 GMT Lois:Thank you for your quick response.   I do want to clarify something.   When the doctors said a rest period it was because of all the trouble Dave was having.   Dave & I talked and one doctor is saying he believes in the quality of life an the other doctor is going for the quanity of life.   I think I am to a point of needing a theripist.   I just feel so helpless at times.  I am the only one working and our insurance hasn't been the greatest (atleast we have it) and I have to work right now.   In the past two years we have had to sell our business to his partner at a very low price just to be able to get out of it and get out of paying taxes with no paycheck coming in and still paying high taxes about killed us too.   Enough of finances because I am sure we are not the only ones.   Did they put you on Velcade with Doxil?   I don't even know what the Doxil is but I saw where you could lose your hair.   Dave says this isn't a big deal to people but the tears at home tells me it is.    He just says I have already done all that why do I have to again?    I know that everyone out there is saying that things are going OK and they are hanging in there but there has to be times when they want to scream and yell "WHY ME!!!!!!!!!!!!!!!!"   Connie    connie1 Tue, 15 Jul 2008 00:00:00 GMT Hi - so sorry about your husband's troubles. I can just tell you about my father's experience with Velcade so far. And yes, everyone is different, but so far, for us, I think the Velcade itself has been a walk in the park, compared to other things i hear about.My dad has MM -- Stage III, with a lot of bone damage in the pelvic/hip areas. He's 77 years old, but prior to this, an extremely young, on-the-go, still working, active 77.  He was diagnosed officially in November of 2007 and they started him on Velcade as his initial treatment almost immediately. The standard is Velcade IV, twice a week (and they will usually put someone on a Dex/Decadron steriod pill along with it). For the first month, my dad got the Velcade twice a week. But since January, he only gets it once a week, because at the time, twice a week was really too much of a toll on him, his lack of mobility, etc (he had a severe compression fracture of the spine). As far as side effects, for him -- i would say the only thing it has caused him is occassional diarrhea. He usually gets the diarrhea about a day or two after the Velcade treatment, and then it lightens up. He does not get nauseous (they give you an anti-nausea thing in the drip beforehand). Once in a while, he may get some tingling in his leg (i am told that neuropathy is a side effect) but for him, it is practically nothing. For a while there, he was getting crazy diarrhea which i was worried about, but after much worrying and observation, i am convinced it was due to the daily Prilosec he was taking for 5 months. Once he stopped taking that, i saw a lot of improvement. Also, if your husband happens to experience a lot of diarrhea due to the Velcade, they can give you a medicine to help with that. My dad now takes a prescription pill -- it's called Lomitol, fyi. That seems to have helped his problem. As far as Velcade's effect on the cancer, it was his first course of treatment and thankfully, worked like magic, almost immediately. His numbers were crazy high when he was first diagnosed, and then within a couple of weeks -- the dropped significantly. The normal range for IGA is 70 to 400... upon diagnosis he was 3400 (!) -- and then after one round of Velcade, it dropped to 400... then after that, continues to hold around 105 - 115. Not totally gone but stable. I have heard about some people not doing well with Velcade in other cases... some people get bad neuropathy, which you have to watch. Some people it effects their eyes/vision, some people get headaches, etc. For my dad, it's been pretty okay as far as side effects. If i'm not mistaken, I think a lot of doctors are using it now as a first line of treatment, because it seems to be very effective regarding the cancer, and also because for many, it seems fairly easy to tolerate. But as you know with this type of cancer -- everyone's case is different. My dad is now doing Velcade for almost 8 months (with short breaks/rest periods in between). He also gets Aredia (iv) once a month. He no longer takes the Dex/Steriods (was only on that for a few months). He is now very active again and thanfully, able to go out a bit and get around much better. I know it's not going to last permanently, but i thank god for Velcade and that it worked. I also see what other people go thru with regular Chemotherapy, etc and am thankful that my dad didn't have to suffer/be miserable, with that kind of treatment. Another reason why i was extrememly grateful for the Velcade -- that is covered with his insurance with no problems whatsoever, but initially, they were also going to put him on Thalidomide with it... but his insurance barely covered a tiny portion of it, and he his co-pay would have been $3800 a month -- which he could absolutely not afford. So we could not get the Thalidomide, which i thought was a 'death sentence' at the time -- but it wasn't, thanks to Velcade.I wish you & your husband well and don't worry, things have a way of working out. I know what you mean by wanting your husband to have a 'break' and some peace for a while, i feel the same for my dad. If he had his way, he'd just like to stay home forever and pretend he's not sick!         DebJr Tue, 15 Jul 2008 00:00:00 GMT I'm currently on Velcade, Thalomide and Dex.  I have troubles with dizziness and some numbness in my feet and hands.  My guess is the Thalomide is causing most of the problems.  I take Vecade four times a month in sink with my pulsed Dex.  I can appreciate the battle going on between your husband's ears.  I've had two stem cell transplants since Feb 08 and I'm scheduled for consolidation chemo (D-PACE) in Aug.  I've had enough high dose chemo for my liking.  However, I know that it's my last chance to really lay the lumber on those remaining MM cells.  After consolidation, I'll have 2 years of maintenance drugs to take (Velcade, Thal, and Dex).  I've met numerous people who have had one transplant 1-2 years ago who are back and now in the process of having a tandum.  That will be three transplants in that short of time.  Once the MM comes back, the transplants are used to re-set the myeloma clock...so I'm told.  You're right, many of us get sick of the treatment...I know I'm tired of it...but we know we owe it to our families, friends, and ourselves to step up to the line and fight.  I'm 47, dx in Nov 07, have been in complete remission since Jan 08, and haven't seen my long hair since Dec 07....can't wait to have it back. If/when my MM comes back, I have enough stem cells frozen for two more transplants.  I'm hoping I don't see the beast again for many years, if ever. God bless all of you caregivers.  I've shed many tears on my wife's shoulder.  She has felt every stick, poke, and tasted every drop of poison that has flowed through my vains.  You're all amazing strong people.Keep fighting the good fight. UTboy Tue, 15 Jul 2008 00:00:00 GMT Hey Connie,You said: Enough of finances because I am sure we are not the only ones.   I did not have primary insurance last year so I know what you're going through.Did they put you on Velcade with Doxil?  No.  I'm on Velcade and Decadron (steriod).I don't even know what the Doxil is but I saw where you could lose your hair.   Dave says this isn't a big deal to people but the tears at home tells me it is.   I don't know what Doxil is either. As far as losing hair, I had none for over a year and it is very hard to get used to. I have quite a collection of hats!  But if it means living a few more years & wearing the hats, then it's worth it.He just says I have already done all that why do I have to again?   Unfortunately, that's part of surviving the cancer. I know that everyone out there is saying that things are going OK and they are hanging in there but there has to be times when they want to scream and yell "WHY ME!!!!!!!!!!!!!!!!"   Of course we do!Lois LoisA Tue, 15 Jul 2008 00:00:00 GMT God bless all of you caregivers.  I've shed many tears on my wife's shoulder.  She has felt every stick, poke, and tasted every drop of poison that has flowed through my vains.  You're all amazing strong people.I couldn't have said it any better.  I watched my husband do the same.Lois LoisA Tue, 15 Jul 2008 00:00:00 GMT My wife was on Velcade/Dex for 6+ months prior to her recent SCT and it was quite effective with very few side effects. Numbness in her feet was her primary complaint.It bothers me to hear of the financial burden of medication costs and health care in the US. We are Americans living in Canada and all my wife's treatment and medications have been covered by Canada's Universal Health Care System. Her care has been top-notch with no hesitations to provide her with the latest treatment options. I hope that Americans will keep up the pressure to adopt a Universal Health Care System so that treatment and recovery are the priority and not finances.Best regards to you and your family.Craig  photog Wed, 16 Jul 2008 00:00:00 GMT Good Morning Connie;To answer your first question regarding Velcade's side effects. Most common ones are tiredness, nausea, diarrhea, constipation, decreased blood counts, fever, vomiting and decreased appetite. Most serious adverse effect is peripheral neuropathy (loss of sensation in the hands and feet.) I recall in my reading that one patient had a severe burning sensation in the extremities.I was on Rev/Vel/Dex and experienced none of the side effects. My research has indicated that the Rev/Vel combination counteract each others side effects. Perhaps your husband may wish to try these two together even though he had a bad experience with the Rev earlier.Doxil you will need to access this site: http://www.doxil.com/learn_doxil/about_doxil.jsp I have read that Doxil is some serious chemo and along with it naturally comes some serious side effects. Some of which can be long term, non reversible effects. Tread lightly!If you reveiw the archives, some other posters have discovered financial ways to help with the treatment payments. There is help out there.Take care;Kevin   K. C. Wed, 16 Jul 2008 00:00:00 GMT From Anna,Hi Connie, Sorry his having so much trouble. One side effect with Dad was blood clots.  He had also done Thalidomide and it can cause blood clots and Velcade is a form of Thalidomide.  Might mess up his stomach.  Don't know about this.Your friend,Anna  Anna9563 Thu, 17 Jul 2008 00:00:00 GMT Hi Connie --You've had the best of responses from some of the BEST participants on this board, ie: Kevin, Lois, Deb Jr and Craig and all of the advice is valid.  I'd just like to add one small point.  I had 4 rounds of Velcade and ended up with the WORST headache ever, causing me to be hospitalised for a week until they could finally get it under control.  Needless to say I was taken off Velcade!  But my suggestion is this:  Finding out about all the side effects is essential before you start any new medication because we all react so differently to each of these drugs.  And, when you are put on one of them it is ESSENTIAL to report any side effect as soon as it manifests, not wait until your next doctors visit, so that decisions can be made immediately as to whether or not to reduce the dose, change the meds, or stop completely.  Don't wait but act promptly is the way to manage side effects and get the best from these new drugs.  Many of us have had horrible reactions to one drug while sailing through with fantastic results on another and then we have read about friends (on this board) who have exactly the opposite reactions!!  It seems impossible, but if you don't try because you are scared of what you have heard about a drug, then you may miss out on the one drug that will work for him without any side effects!!!  Good luck in your search, but be very aware of any reactions his body has and be prepared to react immediately if necessary.  Cheers, Cath poppy/cath Fri, 18 Jul 2008 00:00:00 GMT The thing that scares me after looking at this Doxil on line is that it looks like they use this for ovarian cancer.  It looks like BAD stuff.   Has any other MM patients been on Doxil with Velcade?   connie1 Fri, 18 Jul 2008 00:00:00 GMT Good Evening Lois;I have quite a collection of hats!  You wouldn't be one of those "Red Hat Society" ladies would you?Take care;Kevin K. C. Sat, 19 Jul 2008 00:00:00 GMT Kevin, You wouldn't be one of those "Red Hat Society" ladies would you?No way, although I do like red!Lois LoisA Sat, 19 Jul 2008 00:00:00 GMT