Good day, myeloma warriors!
I was diagnosed in June 2014 with low-risk multiple myeloma. I see a myeloma specialist at a respected cancer center. I had 8 cycles of Revlimid, Velcade, and dexamethasone with study drug panobinostat (Farydak) with no transplant. My stem cells are tucked away in the freezer at the hospital. I'm now on maintenance of Revlimid and panobinostat.
My M-spike at diagnosis was 3.6 g/dL (36 g/L) and it has been steady at 0.6 g/dL for months with a slow decline.
I'm doing very well and only have diarrhea and fatigue issues, which are manageable. However, I seem to get infections (head colds, cough) that typically postpone my next cycle of chemo until my counts improve. My oncologist is recommending IVIG (intravenous immunoglobulin) infusions to boast my metabolism.
What can I expect while being on IVIG?
Forums
-
Lisa Stephenson - Name: Lisa Stephenson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 61
Re: IVIG infusions - what to expect?
Hi Lisa,
Welcome the forum!
Note that the advanced search link at the top right of this forum is your buddy. Just go there, type in "IVIG" and limit the search to "post subjects and message text". You will get hits like this one:
https://myelomabeacon.org/forum/ivig-for-low-immune-system-t5995.html
Welcome the forum!
Note that the advanced search link at the top right of this forum is your buddy. Just go there, type in "IVIG" and limit the search to "post subjects and message text". You will get hits like this one:
https://myelomabeacon.org/forum/ivig-for-low-immune-system-t5995.html
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: IVIG infusions - what to expect?
Hi Lisa,
I have been receiving IVIG infusions for 10 months now and I haven't had so much as a cold. Before that time, I developed a sinus infection almost monthly and was living on antibiotics.
We live a distance from the hospital, and so I give myself weekly infusions at home, using a simple pump system. It's very easy and only takes 20 minutes. Also, the IgG arrives quickly and with no hassle whenever I need it, unlike most meds I have had to order. We've also never had trouble with our insurance company.
It's definitely worth looking into if you are experiencing a lot of infections.
Best of luck! Dana
I have been receiving IVIG infusions for 10 months now and I haven't had so much as a cold. Before that time, I developed a sinus infection almost monthly and was living on antibiotics.
We live a distance from the hospital, and so I give myself weekly infusions at home, using a simple pump system. It's very easy and only takes 20 minutes. Also, the IgG arrives quickly and with no hassle whenever I need it, unlike most meds I have had to order. We've also never had trouble with our insurance company.
It's definitely worth looking into if you are experiencing a lot of infections.
Best of luck! Dana
-
Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: IVIG infusions - what to expect?
Hi Lisa,
I have been on IVIG for 2 years, never a problem with it, I also am Revlimid, dex, and trial drug panobinostat (Farydak). Been in trial for 17 cycles. Started out with M-spike of 5.5 g/dL (55 g/L). In three months, my M-spike went to 0, so happy about that.
What are your thoughts about panobinostat? I would be very interested in knowing.
Thank you,
Joe
I have been on IVIG for 2 years, never a problem with it, I also am Revlimid, dex, and trial drug panobinostat (Farydak). Been in trial for 17 cycles. Started out with M-spike of 5.5 g/dL (55 g/L). In three months, my M-spike went to 0, so happy about that.
What are your thoughts about panobinostat? I would be very interested in knowing.
Thank you,
Joe
Re: IVIG infusions - what to expect?
So sorry, Joe, to just now replying! I'm new to posting in the gorum and just found your response.
I have been on panobinostat for 22 cycles, first with RVD as induction chemo, then with Revlimid as my maintenance program. I have fatigue, diarrhea and infection issues, but all are manageable. The chronic infections at the end of my cycles have prompted my oncologist to begin IVIG infusions this month.
My doctor can't pinpoint if the above issues are a result of the panobinostat, the Revlimid or both. However, she feels that panobinostat is a very valuable drug that prolongs remission. I also see another myeloma specialist for second opinions and he feels the same way. My M-Spike at prognosis was 3.6 and is now 0.6. Both doctors felt it was not necessary to have a transplant but to harvest in the event that I will need one later. I have stayed at 0.8 and below for at least a year. The oncologists are very pleased with that. My latest bone marrow biopsy showed 1-2% disease.
I'm not sure if I have answered your question, except to say, I think that panobinostat is a worthwhile drug. So, did you not have any side effects from the IVIG?
Thanks!!
Lisa
I have been on panobinostat for 22 cycles, first with RVD as induction chemo, then with Revlimid as my maintenance program. I have fatigue, diarrhea and infection issues, but all are manageable. The chronic infections at the end of my cycles have prompted my oncologist to begin IVIG infusions this month.
My doctor can't pinpoint if the above issues are a result of the panobinostat, the Revlimid or both. However, she feels that panobinostat is a very valuable drug that prolongs remission. I also see another myeloma specialist for second opinions and he feels the same way. My M-Spike at prognosis was 3.6 and is now 0.6. Both doctors felt it was not necessary to have a transplant but to harvest in the event that I will need one later. I have stayed at 0.8 and below for at least a year. The oncologists are very pleased with that. My latest bone marrow biopsy showed 1-2% disease.
I'm not sure if I have answered your question, except to say, I think that panobinostat is a worthwhile drug. So, did you not have any side effects from the IVIG?
Thanks!!
Lisa
-
Lisa Stephenson - Name: Lisa Stephenson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 61
Re: IVIG infusions - what to expect?
Hi Dana,
Thanks so much for your reply. How encouraging it is to hear that IVIG has helped you with infections. My insurance company thankfully has approved the infusions. I will receive my first infusion April 25 and have been told to expect the infusion to take 4 hours.
Did you have any side effects during or after your first 2-3 infusions? From what I understand, if you get along fine with the first several treatments, then a patient should not have any problems there after.
Glad to hear you are doing so well!
Lisa
Thanks so much for your reply. How encouraging it is to hear that IVIG has helped you with infections. My insurance company thankfully has approved the infusions. I will receive my first infusion April 25 and have been told to expect the infusion to take 4 hours.
Did you have any side effects during or after your first 2-3 infusions? From what I understand, if you get along fine with the first several treatments, then a patient should not have any problems there after.
Glad to hear you are doing so well!
Lisa
-
Lisa Stephenson - Name: Lisa Stephenson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 61
Re: IVIG infusions - what to expect?
Hi Multibilly!
Thanks for your help on how to navigate the Forum. I need ALL the help I can get!
Lisa
Thanks for your help on how to navigate the Forum. I need ALL the help I can get!
Lisa
-
Lisa Stephenson - Name: Lisa Stephenson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 61
Re: IVIG infusions - what to expect?
Hi,
During my Revlimid cycles, I have sinus congestion for seemingly random periods, but no infection. My doctor recommended using saline nose spray and it works wonders to keep me clear. My theory is that Revlimid dries out my sinuses, so the congestion is an overcompensation by my mucus membranes.
Revlimid dries out my skin too, so it may be doing the same for my sinuses. The saline spray I use is generic and very inexpensive at any mart-type store.
Hope this helps.
Best! BN
During my Revlimid cycles, I have sinus congestion for seemingly random periods, but no infection. My doctor recommended using saline nose spray and it works wonders to keep me clear. My theory is that Revlimid dries out my sinuses, so the congestion is an overcompensation by my mucus membranes.
Revlimid dries out my skin too, so it may be doing the same for my sinuses. The saline spray I use is generic and very inexpensive at any mart-type store.
Hope this helps.
Best! BN
-
Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: IVIG infusions - what to expect?
Hi Lisa,
I'm glad your insurance has approved the infusion!
I have never had a reaction, but also I have never received the long, 4-hour infusion at the hospital. Since we live about 2 hours from where I see a myeloma specialist, I decided to give myself weekly IVIG infusions at home. It is very easy to do, and takes about 20 minutes total. Otherwise I would have a 2-hour drive each way, plus 4 hours in the chair. That on top of monthly Zometa and other appointments sounded like a lot for me, although still worth it, I'm sure! But I love the home treatment option and the needles are so tiny that they barely leave a mark.
I'm sure you'll do well with the treatment on Monday! I still have not had so much as a cold, and I do a lot of traveling. I also have low neutrophils and so this has made a wonderful contribution to my quality of life. Best of luck!
Danaj
I'm glad your insurance has approved the infusion!
I have never had a reaction, but also I have never received the long, 4-hour infusion at the hospital. Since we live about 2 hours from where I see a myeloma specialist, I decided to give myself weekly IVIG infusions at home. It is very easy to do, and takes about 20 minutes total. Otherwise I would have a 2-hour drive each way, plus 4 hours in the chair. That on top of monthly Zometa and other appointments sounded like a lot for me, although still worth it, I'm sure! But I love the home treatment option and the needles are so tiny that they barely leave a mark.
I'm sure you'll do well with the treatment on Monday! I still have not had so much as a cold, and I do a lot of traveling. I also have low neutrophils and so this has made a wonderful contribution to my quality of life. Best of luck!
Danaj
-
Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: IVIG infusions - what to expect?
Hello all,
I'm also wondering what to expect when getting IVIG infusions.
I just came home from having an auto stem cell transplant. My platelets and WBC are doing well within the ranges. But my transplant doctor pointed out that my B-cell's are low. Basically hypogammaglobulinemia. So he has ordered an IVIG infusion.
The order says to pre-medicate with either Tylenol (acetaminophen, paracetamol) 650 mg, Benadryl (diphenhydramine) 25 mg, or hydrocortisone 100 mg.
So, as I said, I'm just wondering what to expect.
Thank You, George
I'm also wondering what to expect when getting IVIG infusions.
I just came home from having an auto stem cell transplant. My platelets and WBC are doing well within the ranges. But my transplant doctor pointed out that my B-cell's are low. Basically hypogammaglobulinemia. So he has ordered an IVIG infusion.
The order says to pre-medicate with either Tylenol (acetaminophen, paracetamol) 650 mg, Benadryl (diphenhydramine) 25 mg, or hydrocortisone 100 mg.
So, as I said, I'm just wondering what to expect.
Thank You, George
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
11 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects