Velcade

Hello everyone, my name is Ana, I am in my mid 50's and a native New Yorker of Cuban descent and I am a college grad.I have had M.M. for about 16/17 years.For the first 6/7 years I was mis-diagnosed 3 times.By the time the correct diagnoses came I had schrunk almost 5 inches and was hospitalized for 3 mos. paralized and the doctors thought I would never walk again.At that juncture treatment began and miraculously I am walking and 10 years later still alive.I had an autologous bone marrow transplant about 9years ago and the standard chemo therapies up until recently when I entered the "Refractory Myeloma" stage.Which means that the treatment that had been keeping me alive had lost its efficacy because my body had finally developed a resistance to it.So my doctor suggested Velcade as a last alternative.(Thalidomide did not help much).I am in the middle of the 3rd cycle.The side effects of severe diarrhea,constipation,vomiting,chills and cold sweats have landed me in the E.R. twice.I walk with a cane and I've been told that my spine is near complete callapse.I pray, juice. wheat grass and drink Essiac tea every chance I get.And of course Aredia once a mo.Is there anyone out there that has a similiar background as mine? Can we compare notes and learn from each other?Looking forward to a healthy exchange.Thank you,Ana

 Yes Anna Me:

I am only 3 years post discovery. It took 9mths to a year before the docs figured it out.  I lost 4 inches and was in the same boat, unable to walk lift my arms etc.  By the way I did a post on this site so go back and read it as it will help you. My post was Titled MM in remission.

Velcade is given as a last resort.  Have you tried Revlamid.  That has the least side effects.  I am amazed you are still here with that history..God wanted you to live.

Because I took alternative medicine sometimes I think people are worried, that when things like this are posted,  that  I recomend not seeking medical help but I ALWAYS SAY SEE YOUR DOCTOR and work with them. (I used to be an Oncolgy nurse) A person who seeks alternative help is just looking for a way to stay alive.  I personally took Poly mva (www.polymva.com) and it is very effective with Revalimid.(I did not take that as it was not available at the time and so I just chose poly).  3 Of my cancer buddies are doing great on the revlamid and the poly.  Not all doctors believe in alternative but it is your life. Poly does not work for everyone.

I have been in remission for 15 months now and I take a maintence dose of poly daily.  I also try to avoid sugar and other harmful substances. Not everyone is going to have the success I  did and each one has to choose their own path.

In my humble opinon Velcade has way too many side effects and all the succesful MM patients I know, have gone off it and switched to Revlamid.

All the best and I hope this helps:  Elaine 

On 3/11/2007 Ana13 wrote:

Hello everyone, my name is Ana, I am in my mid 50's and a native New Yorker of Cuban descent and I am a college grad.I have had M.M. for about 16/17 years.For the first 6/7 years I was mis-diagnosed 3 times.By the time the correct diagnoses came I had schrunk almost 5 inches and was hospitalized for 3 mos. paralized and the doctors thought I would never walk again.At that juncture treatment began and miraculously I am walking and 10 years later still alive.I had an autologous bone marrow transplant about 9years ago and the standard chemo therapies up until recently when I entered the "Refractory Myeloma" stage.Which means that the treatment that had been keeping me alive had lost its efficacy because my body had finally developed a resistance to it.So my doctor suggested Velcade as a last alternative.(Thalidomide did not help much).I am in the middle of the 3rd cycle.The side effects of severe diarrhea,constipation,vomiting,chills and cold sweats have landed me in the E.R. twice.I walk with a cane and I've been told that my spine is near complete callapse.I pray, juice. wheat grass and drink Essiac tea every chance I get.And of course Aredia once a mo.Is there anyone out there that has a similiar background as mine? Can we compare notes and learn from each other?Looking forward to a healthy exchange.Thank you,Ana

 

Hi Fellow MM sufferers

I was diagnosed 4 years ago and went into the first Velcade trials at Dana Farber in Boston. I drove from Maine to Boston twice a week and still worked, hardly any side effects at all, a little neurophy and i was tired. I cannot say enough about Velcade. I would tell anyone with MM to run not walk to your oncologist and ask to go on Velcade.  It is a breakthru in Myeloma treatment and I thank God that I went on it and have been on and off it a few times since 03.  Go on the web and read up on it.  Dr. Paul Richardson at Dana Farber is amazing and has been all over the world talking about this drug.  I am amazed when I talk to people that they either havent heard of it or have heard some horror stories about side effects.  We are all differnt and will react differently to medications.  I hope this reaches some of you that have not tried this amazing drug, you won't even lose your hair!!

Patricia B

 

On 3/11/2007 Commonsense2265 wrote:

 Yes Anna Me:

I am only 3 years post discovery. It took 9mths to a year before the docs figured it out.  I lost 4 inches and was in the same boat, unable to walk lift my arms etc.  By the way I did a post on this site so go back and read it as it will help you. My post was Titled MM in remission.

Velcade is given as a last resort.  Have you tried Revlamid.  That has the least side effects.  I am amazed you are still here with that history..God wanted you to live.

Because I took alternative medicine sometimes I think people are worried, that when things like this are posted,  that  I recomend not seeking medical help but I ALWAYS SAY SEE YOUR DOCTOR and work with them. (I used to be an Oncolgy nurse) A person who seeks alternative help is just looking for a way to stay alive.  I personally took Poly mva (www.polymva.com) and it is very effective with Revalimid.(I did not take that as it was not available at the time and so I just chose poly).  3 Of my cancer buddies are doing great on the revlamid and the poly.  Not all doctors believe in alternative but it is your life. Poly does not work for everyone.

I have been in remission for 15 months now and I take a maintence dose of poly daily.  I also try to avoid sugar and other harmful substances. Not everyone is going to have the success I  did and each one has to choose their own path.

In my humble opinon Velcade has way too many side effects and all the succesful MM patients I know, have gone off it and switched to Revlamid.

All the best and I hope this helps:  Elaine 

On 3/11/2007 Ana13 wrote:

Hello everyone, my name is Ana, I am in my mid 50's and a native New Yorker of Cuban descent and I am a college grad.I have had M.M. for about 16/17 years.For the first 6/7 years I was mis-diagnosed 3 times.By the time the correct diagnoses came I had schrunk almost 5 inches and was hospitalized for 3 mos. paralized and the doctors thought I would never walk again.At that juncture treatment began and miraculously I am walking and 10 years later still alive.I had an autologous bone marrow transplant about 9years ago and the standard chemo therapies up until recently when I entered the "Refractory Myeloma" stage.Which means that the treatment that had been keeping me alive had lost its efficacy because my body had finally developed a resistance to it.So my doctor suggested Velcade as a last alternative.(Thalidomide did not help much).I am in the middle of the 3rd cycle.The side effects of severe diarrhea,constipation,vomiting,chills and cold sweats have landed me in the E.R. twice.I walk with a cane and I've been told that my spine is near complete callapse.I pray, juice. wheat grass and drink Essiac tea every chance I get.And of course Aredia once a mo.Is there anyone out there that has a similiar background as mine? Can we compare notes and learn from each other?Looking forward to a healthy exchange.Thank you,Ana

 

 

Dear Ana,

I am 55 this year and was diagnosed with MM 6 years ago. I have resistant MM. When diagnosed my IgG was 8000 ( range 729 - 1200). I was being prepared to have a stem cell transplant but they couldn't get my counts down below 4000  and I almost died from the chemo I was given. They only gave me 3-6 months. Thalimide was my only alternative so I tried it and it  worked for 18 months. Velcade had just been approved and I felt I must have a guardian angel because it worked wonders for 2 years. My side effects were only constipation and neuropathy. I started taking Lycria for the neuropathy and now no more neuropathy. My IgG counts started to increase very rapidly so now I am 12 weeks on velcade and 12 weeks off. I also have Multiple Sclerosis which neuropathy and fatigue are my only symptoms. I also agree with Patricia B that I think everyone should check with their doctors to see if velcade can work for them.  I also am a nurse but no longer working. Does anyone have problems with memory? That is my biggest problem now. I can't work anymore because of it. I am not sure it is do to my Multiple Sclerosis or the chemo treatments.  Take care all and hang in there.  Darlene H 

 

Dear Darlene, Thank you for your response, You mention that you took Velcade for 2 yrs. Is that because  you didn't need it anymore or because it stopped having a positive effect? And what is "resistant Meyeloma".And yes my memory has been affected but I am not sure what to attribute that to.Did your diagnoses come early? If not what condition are your bones in?The side effects of Velcade for me have been quite debilitating. After an infusion, I cannot leave the house for at least 3 days.And why on earth is it so expensive? I find it ironic that, the chemo that has kept me alive for ten years was soooooooo affordable. And now the cost of Velcade is the exact opposite.I feel these drug companies exploit our despair and desperation.And there are NO guarantees.Even with insurance the cost is rediculous.The drive to go on can become illusive easily.Sometimes I feel so defeated.Yet every new sunrise is reassuring.God bless us all and good luck and please stay in touch,Ana

I am writing from England, where we have the National Health Service.  Contrary to popular belief it is not free, a substantial amount is taken from our salaries each month/week in National Insurance Contributions to pay for our healthcare.

My husband has MM and has had an autologous SCT after chemotherapy and thalidomide and is now in remission thankfully.  However, our Government has decided that Velcade will not be made available on the NHS to MM patients in England (although it has been approved for the Scots, Irish and Welsh!). We have been given prices of £15,000 per session to buy the drug privately.  Obviously, we don't need it yet but its a constant worry each time we have to visit the doc for check ups

He is at present suffering with multiple rib fractures and has lost about 5" in height.  Also, because of peripheral neuropathy he has almost no use of his hands.

Don't know where to turn really, just wanted to put the facts down here.   

 

 

 

On 3/19/2007 Lucymac wrote:

I am writing from England, where we have the National Health Service.  Contrary to popular belief it is not free, a substantial amount is taken from our salaries each month/week in National Insurance Contributions to pay for our healthcare.

My husband has MM and has had an autologous SCT after chemotherapy and thalidomide and is now in remission thankfully.  However, our Government has decided that Velcade will not be made available on the NHS to MM patients in England (although it has been approved for the Scots, Irish and Welsh!). We have been given prices of £15,000 per session to buy the drug privately.  Obviously, we don't need it yet but its a constant worry each time we have to visit the doc for check ups

He is at present suffering with multiple rib fractures and has lost about 5" in height.  Also, because of peripheral neuropathy he has almost no use of his hands.

Don't know where to turn really, just wanted to put the facts down here.   

 

hi lucy

my prayers are with you and your husband i know how you feel my husband has had mm for 10years going throught so many chemos we have lost count he also tried thaliamide and stopped it because of nerve problems but had over 3 years remmission we are now waiting for permission for velcade still have two weeks to wait consultants seem to think he will get it with his history but stoll scared we have looked at selling opur house to pay for treatment so i really do know how you feel it is very worrying i have lobbied my mp to ask the minister for health why velcade is not given on demand in england but can be had elswhere on the national health mp replied he has an appointment with health minister to discus this so will await his reply mm needs more publicity as people dont seem to have heard about it  keep your chin up and send an email to your mp you can do it throught THEYWORKFORYOU.COM it will give you your mps email address please do this as the more publicity the better seems long this but i find it hard sometimetimes to cope as i dont have anybody else to talk to same as you

 

 

Thanks for that reply Mobil. I don't know at what stage the Velcade treatment would begin.  Bill is still in remission and I believe that you have to have had at least one try on some other treatment before Velcade would be considered, so I might be a bit too early in asking for the drug before it's needed.

I have no understanding of the disease.  My husband is trying to keep it all to himself and as a result I haven't even been given the opportunity to ask the Consultant how the stages progress.  So - I don't know where we are to be honest, although I do know that they have said that he must have had MM for years before he went to the doctor.

He's not too well at the moment so we'll see how things develop from here on it.  Thanks for your reply though.

Lucy

 

 

 

Thanks for that reply Mobil. I don't know at what stage the Velcade treatment would begin.  Bill is still in remission and I believe that you have to have had at least one try on some other treatment before Velcade would be considered, so I might be a bit too early in asking for the drug before it's needed.

I have no understanding of the disease.  My husband is trying to keep it all to himself and as a result I haven't even been given the opportunity to ask the Consultant how the stages progress.  So - I don't know where we are to be honest, although I do know that they have said that he must have had MM for years before he went to the doctor.

He's not too well at the moment so we'll see how things develop from here on it.  Thanks for your reply though.

Lucy

 

 

 

On 3/19/2007 Lucymac wrote:

I am writing from England, where we have the National Health Service.  Contrary to popular belief it is not free, a substantial amount is taken from our salaries each month/week in National Insurance Contributions to pay for our healthcare.

My husband has MM and has had an autologous SCT after chemotherapy and thalidomide and is now in remission thankfully.  However, our Government has decided that Velcade will not be made available on the NHS to MM patients in England (although it has been approved for the Scots, Irish and Welsh!). We have been given prices of £15,000 per session to buy the drug privately.  Obviously, we don't need it yet but its a constant worry each time we have to visit the doc for check ups

He is at present suffering with multiple rib fractures and has lost about 5" in height.  Also, because of peripheral neuropathy he has almost no use of his hands.

Don't know where to turn really, just wanted to put the facts down here.   

 

 

 

Hi this is Patricia B again.

I heard very recently that the National Health have ok'ed Velcade because of the outrage of alot of people.  So I hope that you can get it now.  I guess many people have bad side effects, I had some and did'nt always feel great but it was well worth it to see my M Spike go down.

Now I am in this clinical trial for a new drug similar to Velcade but with less side effects.  It is from the ocean and i am very excited about it even tho I don't know if it's working yet.

All the very best.  A fellow Brit in the US.