Anyone With Velcade (bortezomib) Experience

hyeager
hyeager Member Posts: 1
edited June 2023 in Multiple Myeloma #1
I'm 41 and just diagnosed in stage III with Multiple Myeloma. My doctor is starting me in a clinical trial with Velcade next week. I'll be going twice a week for IV treatment, two weeks on and one week off for 12 weeks. Has anyone had any experience with this treatment which they could share? What dosage level did you take? Thank you for your insight!
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Comments

  • sylbates
    sylbates Member Posts: 8
    #2
    My dad, 74, was diagnosed at 73 and is on Velcade. He will be going on his 2nd month. So far, there doesn't seem to be any sign of progress other than weakness from the drug. After 2 more cycles, and still showing no sign of progress, the doctor will discontinue Velcade. I've suggest going back to Vinchristin, my dad has received 2 cycles of that, and showed significant result. Went from 7800 abnormal protein level down to 800 within 5 months.
  • sylbates
    sylbates Member Posts: 8
    #3
    sylbates said:

    My dad, 74, was diagnosed at 73 and is on Velcade. He will be going on his 2nd month. So far, there doesn't seem to be any sign of progress other than weakness from the drug. After 2 more cycles, and still showing no sign of progress, the doctor will discontinue Velcade. I've suggest going back to Vinchristin, my dad has received 2 cycles of that, and showed significant result. Went from 7800 abnormal protein level down to 800 within 5 months.

    Just would like to say Velcade has done more harm than good. He is in critical care at the hospital. He is extremely fatigue, and has not had any bowel movement in more than 2 weeks. These are couple of the side effects from Velcade. In terms of his cancer result, absolutely no good result from it!
  • katclaws
    katclaws Member Posts: 2
    #4
    hyeager, I wish you the very best of luck with the Valcade. My 82 yr old father may be starting on it on Oct 25th and I have been trying to find out more about it too.

    sykbatesm I'm so sorry that your Dad is not respoding to the Valcade.

    I will be keeping you both in my prayers.

    I hope someone else will post about their experience with Valcade as well
  • MySoulmate
    MySoulmate Member Posts: 1
    #5
    Hi my wife is 47 and was recently diagnosed w/StageIII MM and she is on Thalomid/Dexamethasone. She is responding well so far. But I know that there is a MATRIX out on the latest Clinical Trials by the IMF. There are many combinations being tested...ei. Vel/alone...Vel/Thalomid...Vel/Melphalin...etc. you must have heard about them. So there is a lot going on and good luck. Wish I could be of more help.
  • katclaws
    katclaws Member Posts: 2
    #6
    Hello again hyeager, I was wondering how you were doing on the Velcade? My Dad will be starting it on Friday, Oct 29. They are hoping to add Thalidomide in conjunction with the Velcade, but he isn't covered by insurance or Medicare. I am trying to get help through Celgene the company that make Thalidomide and we are also trying the VA. Unfortunately, that may take up to two months-which I wish he had the luxury of. I've been having a hard time finding any personal experience stories from patients. I hope it will work out well for you and get you into remission asap. Keeping you in good thoughts & prayers. Please let us know how you are doing with the Velcade if you feel up to it and have the time. And thank you to mysoulmate for your reply. please keep us posted on your dear wife. It would be greatly appreciated.
  • JohnMike
    JohnMike Member Posts: 1
    #7
    katclaws said:

    hyeager, I wish you the very best of luck with the Valcade. My 82 yr old father may be starting on it on Oct 25th and I have been trying to find out more about it too.

    sykbatesm I'm so sorry that your Dad is not respoding to the Valcade.

    I will be keeping you both in my prayers.

    I hope someone else will post about their experience with Valcade as well

    My mother was diagnosed at 71 with MM. For six and a half years, she was on Alkeran four days of the month, with Prednisone. She was doing very well, but last December, her oncologist tried Thalidomide (1000 dollars a prescription) Her doctor gave her a 28 day supply. She did not respond to it, so he put her on Valcade. She now goes for twice a week for IV Valcade. Doctor says that she is responding (she is now 78), but there are side effects: fatigue, mild nausea, constipation and extreme pain in her fingertips. I am not sure of the dose she is taking, but her doctor assures her that she is doing well. I'm not so sure.

    I will remeber all of you in prayer. Will check back here to see if there is any response.
  • GregK
    GregK Member Posts: 3 Member
    #8
    JohnMike said:

    My mother was diagnosed at 71 with MM. For six and a half years, she was on Alkeran four days of the month, with Prednisone. She was doing very well, but last December, her oncologist tried Thalidomide (1000 dollars a prescription) Her doctor gave her a 28 day supply. She did not respond to it, so he put her on Valcade. She now goes for twice a week for IV Valcade. Doctor says that she is responding (she is now 78), but there are side effects: fatigue, mild nausea, constipation and extreme pain in her fingertips. I am not sure of the dose she is taking, but her doctor assures her that she is doing well. I'm not so sure.

    I will remeber all of you in prayer. Will check back here to see if there is any response.

    I (54 years old) just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.

    I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.

    We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.

    This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.

    I am working with dr on next step.

    Right now the next steps looks like Thalidomide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).

    Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.

    I am searching for information from people that have taken Thalidomide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".
  • GregK
    GregK Member Posts: 3 Member
    #9
    GregK said:

    I (54 years old) just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.

    I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.

    We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.

    This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.

    I am working with dr on next step.

    Right now the next steps looks like Thalidomide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).

    Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.

    I am searching for information from people that have taken Thalidomide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".

    I made a mistake in my message. Just to clarify... The stem cell transplant brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy. Velcade took me from 40-45% to 10-15%. Again, if anyone wants to discuss my experiences with Velcade, please send me an email. I'd also be glad to share experiences with VAD or Stem Cell Transplant. If someone wants to talk on the phone, we can arrange that.
    GregK
  • paterson1010
    paterson1010 Member Posts: 1
    #10
    GregK said:

    I made a mistake in my message. Just to clarify... The stem cell transplant brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy. Velcade took me from 40-45% to 10-15%. Again, if anyone wants to discuss my experiences with Velcade, please send me an email. I'd also be glad to share experiences with VAD or Stem Cell Transplant. If someone wants to talk on the phone, we can arrange that.
    GregK

    Hi Greg,
    I am 64 and was diagnosed with MM almost a year ago. I was on a 4 month regimen of Dex and Thalidomide through January. However at the end of the treatment (last week) I had emergency surgery for a ruptured diverticulitum. A second operation later I now have to decide on my next treatment -- either Chemo followed by bone marrow transplant or VAD. I just heard about VAD 2 days ago from a second opinion doctor so I'm in a quandry as to what to do. I am in stage 2 and had a reduction of MM cells by 50% from the first treatment to 20%. But that was as of March and I'm sure it's increasing again. So that's my situation. You seem very knowledgeable so I'd appreciate any reponse. By the way, this is the first chat room discussion group I've ever participated in so I hope I'm following the right protocol.

    Sheila P
  • robhendr
    robhendr Member Posts: 2
    #11
    GregK said:

    I (54 years old) just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.

    I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.

    We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.

    This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.

    I am working with dr on next step.

    Right now the next steps looks like Thalidomide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).

    Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.

    I am searching for information from people that have taken Thalidomide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".

    Thalidomidde
    Hi, I took thalidimaide as part of my initial second half chemo regimine. I only went through one cycle (2 weeks) before DR and I decided that the neuropothy was getting much worse. SO my experience was that it did have a rapid and significant effect on my neuropathy. I went through additional chem and completed my Stem Cell Transplant on Oct30, 2009. They decided I should be on revlimid as a maintenace therapy. Revlimid is a purified form of thalidomide. Even though I was taking a very low dosage I have had an increase in the neuropathy again. So, once again we have discontinued it. My hands have gotten better within 3 weeks, but feet and lower legs are still a mess impacting my ability to walk and balance. BUT, multipl Myeloma is such an "individualized" cancer and so are the treatments. What negatively impacted me may just be the thing for you. I would just suggest that you heighten your awareness and really be in tune with your body...if you notice an increase or the start of undesireable side effects you have to tell your doctor and weigh risk/reward and your desire for quality of life.
  • Luuka
    Luuka Member Posts: 8
    #12
    Velcade treatment
    Hello, my hubby just came off Velcade last week. Doc decided the previous treatment (Revlimid) was working better so, we are starting Thalidomide today. Revlimid was working, but he had some side effects and had to come off that one. Thal is same family, but this time we are on Coumadin to prevent blood clots.
  • Luuka
    Luuka Member Posts: 8
    #13
    MySoulmate said:

    Hi my wife is 47 and was recently diagnosed w/StageIII MM and she is on Thalomid/Dexamethasone. She is responding well so far. But I know that there is a MATRIX out on the latest Clinical Trials by the IMF. There are many combinations being tested...ei. Vel/alone...Vel/Thalomid...Vel/Melphalin...etc. you must have heard about them. So there is a lot going on and good luck. Wish I could be of more help.

    Thal and Dex
    Hello, hubby starting the Thal with Dex today. What side effects did your wife have? You said it works? Can you give me some more info...appreciate it very much. We've taken Revlimid and Velcade.
  • Luuka
    Luuka Member Posts: 8
    #14
    robhendr said:

    Thalidomidde
    Hi, I took thalidimaide as part of my initial second half chemo regimine. I only went through one cycle (2 weeks) before DR and I decided that the neuropothy was getting much worse. SO my experience was that it did have a rapid and significant effect on my neuropathy. I went through additional chem and completed my Stem Cell Transplant on Oct30, 2009. They decided I should be on revlimid as a maintenace therapy. Revlimid is a purified form of thalidomide. Even though I was taking a very low dosage I have had an increase in the neuropathy again. So, once again we have discontinued it. My hands have gotten better within 3 weeks, but feet and lower legs are still a mess impacting my ability to walk and balance. BUT, multipl Myeloma is such an "individualized" cancer and so are the treatments. What negatively impacted me may just be the thing for you. I would just suggest that you heighten your awareness and really be in tune with your body...if you notice an increase or the start of undesireable side effects you have to tell your doctor and weigh risk/reward and your desire for quality of life.

    Hands and Feet....Neuropathy
    Yes, know what you went through. Hubby is suffering dearly with hands and feet. What did you take for relief? Doc gave him some Neurontin and he is having tough time getting used to it. Did you ever take that? Bet we have to change the Thal too!
  • Luuka
    Luuka Member Posts: 8
    #15
    GregK said:

    I made a mistake in my message. Just to clarify... The stem cell transplant brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy. Velcade took me from 40-45% to 10-15%. Again, if anyone wants to discuss my experiences with Velcade, please send me an email. I'd also be glad to share experiences with VAD or Stem Cell Transplant. If someone wants to talk on the phone, we can arrange that.
    GregK

    Interested in Stem Cell Experience
    Like to hear your experience with the stem cell? What about Velcade? Did you have problems with that one?
  • Luuka
    Luuka Member Posts: 8
    #16
    GregK said:

    I (54 years old) just took three cycles of Velcade combined with Dexamethasone, October 4th to Dec 23rd, 2004. I had between 40-45% involvement of MM cancer cells in my bone marrow biopsy. Three rounds of Velcade brought it down to 10-15%. So it worked very well.

    I got side effect of severe rash on trunk of my body, which took four months to go away and neuropathy. The neruopathy is still being treated with Nuerontin. It has been very painful and is focused mainly on pain and burning in my feet. This past week I feel much better and it might be going away...although very slowly.

    We followed Velcade treatment with autologous Stem Cell Transplant which brought me down to 10-15%. Before the transplant I had high dose chemo (cytoxin for harvest and melphalan before transplant). This was done in January 2005 to mid Feb 2005. Stem Cell transplant zero day was Feb 17, 2005 and I am now at Day 97 past the stem cell transplant.

    This brought me down to 5-10% involvement of MM cancer cells in bone marrow biopsy and was described as a "partial response"...which is supposedly greater than 50% of bad cells went away, but not more than 90%.

    I am working with dr on next step.

    Right now the next steps looks like Thalidomide then another Stem Cell Transplant (they got enough cells for me to do at least one more transplant).

    Please feel free to e-mail me for more particulars on the Velcade/Dex treatment. I would be glad to share any of my experiences that may help you.

    I am searching for information from people that have taken Thalidomide. Particularly, I am trying to judge the risk of getting permanent neuropathy that can, as my dr discribes it, "be a disaster".

    Neurontin
    Hello there, hope the numbers improve. How did you ever get used to taking Neurontin and how long did it take? Hubby having a rough time with it. We just came off Velcade......now starting Thal. Are you taking blood thinner with it?
  • Luuka
    Luuka Member Posts: 8
    #17
    sylbates said:

    Just would like to say Velcade has done more harm than good. He is in critical care at the hospital. He is extremely fatigue, and has not had any bowel movement in more than 2 weeks. These are couple of the side effects from Velcade. In terms of his cancer result, absolutely no good result from it!

    So Sorry
    Know how you feel....hope the doctors find something to help him!!! FAST!!
  • Luuka
    Luuka Member Posts: 8
    #18
    katclaws said:

    Hello again hyeager, I was wondering how you were doing on the Velcade? My Dad will be starting it on Friday, Oct 29. They are hoping to add Thalidomide in conjunction with the Velcade, but he isn't covered by insurance or Medicare. I am trying to get help through Celgene the company that make Thalidomide and we are also trying the VA. Unfortunately, that may take up to two months-which I wish he had the luxury of. I've been having a hard time finding any personal experience stories from patients. I hope it will work out well for you and get you into remission asap. Keeping you in good thoughts & prayers. Please let us know how you are doing with the Velcade if you feel up to it and have the time. And thank you to mysoulmate for your reply. please keep us posted on your dear wife. It would be greatly appreciated.

    There are studies out there
    Hello, sorry to hear about the medicare and insurance problem. Have you tried getting into a study at a larger hospital? There at lots of them out there. What Cancer Center is considered the best? I have heard Mayo and Boston are top of the line.
  • Luuka
    Luuka Member Posts: 8
    #19
    robhendr said:

    Thalidomidde
    Hi, I took thalidimaide as part of my initial second half chemo regimine. I only went through one cycle (2 weeks) before DR and I decided that the neuropothy was getting much worse. SO my experience was that it did have a rapid and significant effect on my neuropathy. I went through additional chem and completed my Stem Cell Transplant on Oct30, 2009. They decided I should be on revlimid as a maintenace therapy. Revlimid is a purified form of thalidomide. Even though I was taking a very low dosage I have had an increase in the neuropathy again. So, once again we have discontinued it. My hands have gotten better within 3 weeks, but feet and lower legs are still a mess impacting my ability to walk and balance. BUT, multipl Myeloma is such an "individualized" cancer and so are the treatments. What negatively impacted me may just be the thing for you. I would just suggest that you heighten your awareness and really be in tune with your body...if you notice an increase or the start of undesireable side effects you have to tell your doctor and weigh risk/reward and your desire for quality of life.

    Your opinion........?
    Do you think Thal is better than Rev?
  • mommynus
    mommynus Member Posts: 1
    #20
    Luuka said:

    Hands and Feet....Neuropathy
    Yes, know what you went through. Hubby is suffering dearly with hands and feet. What did you take for relief? Doc gave him some Neurontin and he is having tough time getting used to it. Did you ever take that? Bet we have to change the Thal too!

    hands and feet
    I finished my last chemo with Velcade about three weeks ago and have been having problems with severe pain in my feet, hands, and legs. The pain can be anything from feeling like they are frozen or burning. I am interested in finding out how the nuerontin worked for you as I am going for my Dr. appt. and would like to ask about this for me. Tomorrow I am having my marrow tested gearing up for my transplant that is coming in the very near future. If anyone has any more advice on how to deal with the pain in hands and feet, especially at night please let me know. By the way I am a 43 year old woman and I know this is typically an older decease but I would love to also hear from anyone in this age brackett to see if having any common problems with the Multiple Myeloma. Good luck to all your in my prayers.
  • JesCheckn
    JesCheckn Member Posts: 2
    #21
    mommynus said:

    hands and feet
    I finished my last chemo with Velcade about three weeks ago and have been having problems with severe pain in my feet, hands, and legs. The pain can be anything from feeling like they are frozen or burning. I am interested in finding out how the nuerontin worked for you as I am going for my Dr. appt. and would like to ask about this for me. Tomorrow I am having my marrow tested gearing up for my transplant that is coming in the very near future. If anyone has any more advice on how to deal with the pain in hands and feet, especially at night please let me know. By the way I am a 43 year old woman and I know this is typically an older decease but I would love to also hear from anyone in this age brackett to see if having any common problems with the Multiple Myeloma. Good luck to all your in my prayers.

    Hi,

    I just started my 3rd cycle of Velcade, Cytoxin, Dexamethasone on Monday, 11/209. Not sure why, but I haven't had much in the way of side effects in my hands nor feet. The worst side effects I've had that are not bad enough to warrant treatment are slight nausea and mild fatigue. I have had constipation problems, but found that Philips tablets remedy that issue.

    I'm 47 and had my first plasmacytoma (precursor to MM) at age 37. 80% of plasmacytoma patients progress to MM in the first 10 years, and my 10 years would have been up in Feb. 2010, but a PET scan revealed 5 lesions on Aug 31, 2009.

    Because I'm younger than the "average" MM patient, I was referred to a stem cell transplant specialist, and those steps have now been put in motion. I'm hoping to have the stem cell transplant before the end of the year.

    Good luck and many prayers to you, as well!

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