My mom has been battling CLL Leukemia for probably at least 15-20 years now. When diagnosed she was told she would not live longer than 10 years even with chemo. My mom is a naturalist, hates medication, and stays active and fights everything she can naturally. My mom refused treatment and fought it naturally. It was not until 2020 the cancer finally began to win and my mom was getting really bad and very weak. The oncologist who was super impressed with how well she did, told her she would not live more than 5 months unless she did something and she was now too weak for chemo. He recommended a drug called Imbruvica. It costs about $20,000 a month which insurance doesn’t cover but thank god my mom has been on a grant that pays for it.

They had her start the Imbruvica at a high dose and we feel that was too much too fast. With the Imbruvica fighting the cancer, it caused severe fluid buildup around her lungs and she had to have a catheter installed in her chest to drain the fluid. That was the worst experience of her life because due to her blood pressure being low they would not put her under and inserted this catheter with no anesthesia and I could hear my mom screaming from the waiting room. I moved in with my mom to drain her daily and feed her back to health.

After six months the catheter was removed and my mom has been doing so much better, but she has been experimenting with reducing the dosage to find the right balance of her blood work being good and mitigating all of the terrible side affects the drug has.

If my mom gets a single chigger bite it is the most horrible thing as her body is over reacting to it and her immune system is very compromised. She is starting to again not be in the best health due to all the side effects, but the Imbruvica works at the cost of her really not having an immune system against other things.

The oncologist suggested IVIG Infusion. He again wanted to start hard and fast and we said no way due to how she reacted to Imbruvica at first and this IVIG can cause kidney issues. The doctor agreed to cut the initial dose in half and we said to the that in half yet again and let’s go from there. So waiting on insurance and trying to do research about this type of infusion as is my mom. I just wonder if anyone here knows anything about it they can share good or bad.

I had IVIG while hospitalized with ITP years ago. If I recall it was around $15,000 per.

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Originally posted by a1abdj:
I had IVIG while hospitalized with ITP years ago. If I recall it was around $15,000 per.

Well here is to hoping Medicare covers it.

I would recommend IV stem cells but you’ll have to go to one of the South American countries to get it done as it’s not FDA approved. Rogan has talked about it a lot over the years. The interview with Mel Gibson was eye opening. It cured cancer for his father. I’m used them for sports injuries and each time 100%. Best of luck.

quote:

Originally posted by a1abdj:
I had IVIG while hospitalized with ITP years ago. If I recall it was around $15,000 per.

Yep. ITP, platelets less than 1000. (back in 2005)
IVIG and Platelets, a month in ICU and then 3 months in a room with no view.

Pretty sure it was about 6x IVIG and 12X platelets until I got over 12,000 count, then 14,000 so I could be discharged, but I told them when I hit 12,000 I was going home and promised not to do MMA or wrestle porcupines.

And it was up around the $20G range, but that may have been both platelets and IVIG.

Had no bad issues from either the platelets or the IVIG. They both did help, and the UVIG gave tremendous "staying power" to the platelets.
(My immune system was attacking my platelets)

The 200MGS of Prednisone for several weeks had me emitting 5G and I think people were using me for WiFi.
They weened me to 80mg a day for a year and some, before my platelets made it to 56,000 and then I tapered off and quit seeing the doctors and blood draws every week.

I was very fortunate the BCBS of Florida was very good coverage at the time.

Hoping your mom is able to get what works for her, Stormin.

Thanks so far. My mom’s Immunoglobulin current level is 300. I need to go to my mom’s next appointment and ask if platelets and Immunoglobulin are blood type dependent. My mom is B- which is a rare blood type and I am O+. If I can donate anything to help her I will.

I had IVIG every couple weeks for several months about 20 years ago. It was intended to address PN (peripherral neuropathy), that may have been caused by a Guillain-Barre type reaction. I stopped when it caused a TIA (Trasient Ischemic Attack) aka mini-stroke. The fluid going into your veins is very thick. Be sure your mother and family are aware of that, and be on the lookout for TIA symptoms. Good luck!

quote:

Originally posted by stiab:
I had IVIG every couple weeks for several months about 20 years ago. It was intended to address PN (peripherral neuropathy), that may have been caused by a Guillain-Barre type reaction. I stopped when it caused a TIA (Trasient Ischemic Attack) aka mini-stroke. The fluid going into your veins is very thick. Be sure your mother and family are aware of that, and be on the lookout for TIA symptoms. Good luck!

Thanks for that information. The Imbruvica also caused a mini-stroke in my mom. My dad died of a stroke and getting a call at 4am by EMS telling me they were taking my mom to the hospital for a stoke was a horrible day as was seeing how she was when I got there. Thank god she recovered from it within about 8 hours. I was living with my mom at the time to take care of her and one of the few weekends I went home to spend time with my wife is when it happened!

My daughter had an IVIG transfusion when she was 2yo when the docs thought she had Kawasaki’s disease. They also thought it was Rocky Mountain spotted fever from a tick bite (gave her doxy for that). Whatever it was, she recovered well enough to be discharged after a week in the pediatric ICU.

IVIG is basically supercharging your blood to help it deal with stuff your immune system cannot. CLL is a hard one. I have CML and consider myself lucky we caught it super early and under management (no cure).

My wife was diagnosed with mixed connective tissue disease (I.e., several symptoms) at age 47. She lost muscle mass and was so very weakened that she couldn’t get out of bed, off the toilet, out of a chair, etc. Her rheumatologist tried the usual drugs and insurance was dragging their feet to approve more aggressive treatment like IVIG. She was hospitalized because she was starting to aspirate her saliva. This allowed the Dr to use IVIG (don’t recall the exact brand) which was a type of cancer treatment (Dr and nurses dressed in protective gear) She responded very well to it.

She’s been on Grifols Gamunix C (?) for the past six years and gets home infusion every FOUR weeks!!

My insurance covers it and my understanding is that it retails for $100k per year.

Do some research and talk with your rheumatologist. It has worked wonders for my wife.

Good luck.

I was hospitalized for just over a week after getting hit with Guillain Barré. Treatment included two IVIG infusions. I recovered enough to be discharged but it took months of physical therapy and occupational therapy for me to become self sufficient.