IVIG recommended

[Cllinmaryland]

I’m currently in remission after my one year Obinutuzumab and Venetoclax treatment. It’s been one year since finishing the Obinutuzumab infusions and my IGG counts remain quite low. My oncologist is recommending IVIG infusions. Has anyone had these? How were the infusions tolerated? Thank you!

[Vizilo]

I started on IVIG once per month in the hospital almost 3 years ago. Other than a few headaches, easily relieved by Tylenol, at the beginning, there were no side effects.

A few months later, I converted to at home weekly IVIG. Infused under the skin (as opposed to your veins with IVIG), generally in your abdomen, this procedure is called SCIG. It’s easy to learn, painless , less than 90 minutes a week at your convenience, safer and best of all, it avoids the IGG peaks and valleys between infusions since one quarter of the immunoglobulin is infused every week as opposed to monthly or longer with IVIG.

No side effects in the 30 months I’ve administered SCIG. So, if it is available to you, it’s a more effective way of getting periodic immunoglobulin.

[Cllinmaryland in reply to Vizilo]

This is very helpful. Thank you!

[noeagaman]

Hello, I have been getting IVIG for about five years now. I started right after FCR treatment that went bad. It did put me in remission, but with what my doctor is calling incomplete recovery. I have had no side affects at all. I started at monthly infusions, and then went to every other month. I had to go back to monthly recently due to several bouts of pneumonia and several bouts of bronchitis. Then a lung fungus. They also increased the amount of IVIG med that I get every month. I still have my port from FCR treatment so they use that instead of my viens. The biggest draw back to me is having to sit there for most of the day while getting the infusion. I'll take that over being sick all the time though. Ever since they increased the amount of IVIG med and lowered the interval I have not gotten sick.

I see that you are in Maryland. I spent five years there in Annapolis working at the Naval Academy and love the area. Now I live in Texas and it does not compare at all...

Chris

[Cllinmaryland in reply to noeagaman]

thank you! I appreciate your input and wish you the best.

I love where we live!

[Panz]

You will be getting many takes on the receiving of IVIG and you will figure out which is best for you. I feel that IVIG is a gift from Heaven as it puts me in a much safer place. I fully understand that there are those who choose the SCIG and that is great but I prefer the IVIG given in the clinic. It is just once a month and I have labs run and see my doctor every month and I feel very comfortable with this action plan. I never missed a month during the two years we were dealing with the Covid Pandemic. I have been doing this for 5 years and would have it no other way but I do see why others prefer the SCIG. I have had CLL for nearly 34 years and this is what works for me.

You will do fine with whatever way you choose to go if you are given a choice. All the very very best and you just keep that deep breathing going and keep a positive attitude and things will go your way!

Panz 💕🙂☘️🙏🌈👍

[Cllinmaryland in reply to Panz]

thank you so much!

[Hidden in reply to Panz]

Hi Panz, its really good to see you dealing well with CLL. you have mentioned you have had CLL for 34 years is the only IVIG thing that have worked for you ?

have you taken any CLL treatment in your journey of CLL?

[Panz in reply to Hidden]

I took Leukeran on and off for 17 years and that destroyed my immune system and that is the reason for the IVIG once a month now. But that was the only oral treatment for CLL. Then when I needed to be treated again I took Imbruvica until I developed two different types of pneumonia in both lungs at the same time and hey pulled me off as that was considered a serious side effect….then when I needed treatment again they put me on Calquence and I remain on that currently and it has been 15 months and I am doing great. I just had TAVR to replace my Aorta Valve in my heart two weeks ago and I didn’t even have to stop the Calquence and I was very happy about that. I am doing super and never had any pain or discomfort of any sort. I did have a fair amount of bruising but I was warned I would due to my platelets being low at at 70 plus they put me on a baby aspirin to prevent blood clots. I haven’t felt this good in a very long time. I am now working hard at building my hemoglobin backup…that is always an issue for me.

We are just so blest to have so many options of oral meds to contribute our CLL. Hope you are doing well….all the very best to you. Please feel free to ask me anything you wish as we are sharing this journey!!

Panz 🙏💕☘️👍🌴🌈🙂

[Smakwater]

Shazaam! on your remission!

JM

[ViPOR]

hi, I have finished a VIPOR trial at NIH in U.S. for my relapsed DLBCL non Hodgkin’s lymphoma. I am in a 2 year CR now. The trial was Venetoclax, Ibrutinib, Prednisone, Obintuzimab, and Revmilid. I had a CAR T trial before VIPOR but only got a 6 month CR and relapsed in 2019. so, then I had the VIPOR trial summer 2020. Ihave been taking IVIG (Gamunex-C) infusions since the CAR T trial and get the infusions every other month. I also prefer getting my IVIG in oncology as my team also do labs so it is a good follow up for me. Plus, they flush my port during those visits. The infusions have helped me avoid bacterial infections since I have no B cells left after the CAR T. I am also on Acyclovir (Valtrex) to protect against shingles and other viral infections. I also had the Shingrix vaccine ( 2 shots). I had gotten shingles during my CAR T and I don’t want it again…..I have not had any side effects with my IVIG infusions. My oncologist prefers the Gamunex -C brand IVIG. I have stayed healthy and am in a2 year CR after the VIPOR immune therapy trial. Best wishes to you for health!

[Cllinmaryland in reply to ViPOR]

This was good information. Thank you! I wish you the best.

[BeckyLUSA]

IVIG is a godsend! No matter how you get it. I just celebrated my 6 yr anniversary of getting it every 6 weeks. The difference in my overall health is amazing.

[Cllinmaryland in reply to BeckyLUSA]

excellent to hear! Thank you!