One of the things I learned is that with CLL shingles is always a concern. Shingles are usually painful little blisters that occur in a dermatomal pattern (one side) of your body. They have been described as looking like “dew drops on rose petals” or vesicles on a red base.
Anyway my shingles may have recurred right before my treatment 4 of Gazyva in the G plus Venetoclax protocol. On my face developed a large weeping hive
My dermatologist doubled my dose of acyclovir from 500 mg per day to 1 g.
So it’s already resolving . Only pot hole in the road . Treatment 4 Gazyva at MDA went great.
WBC 6.9 . Platelets normal . Neuts normal . H/H slightly decreasing. So I am becoming slightly anemic, pressure normal.
Any advice about them overshooting with venetockax next month?
I mean if V is big gun could I go too low on my lymphs or reds or platelets?
Please advise. Any thoughts appreciated
-John
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I was told that if I got too low on neutrophils (500 or less - neutropenia) on Venetoclax that they have a shots program for that. I forgot the name of the shot. I reduced the dosage to 300mg also to help since I'm in the 900s now
Granulocyte Colony Simulating Factor (G-CSF) injections are used to boost neutrophil counts if needed. Lots of different names though, such as Filgrasim/Perfligrastim or Neulasta/Neupogen. They are self administered via a fine needle into the skin over your stomach or your thighs.
You guys have Weirda, I think he would know best about the timing, sequence and dosing of venetoclax. If your platelets are in normal range, there is plenty room to roam there. Mine got to 80 and my doc wasn’t concerned. They just recently got into the normal range for me. I think you are good on the red cells too. I would think neutropenia is the biggest concern. And if it gets low, Weirda will have a plan for that too.
I would ask him about shingrix vaccine and when and if that’s recommended for you. It’s hard to get a hold of, md anderson is one of the few places that has it. I am off acyclovir after my second shingrix dose.
But for the shingles setback, which got handled, it sounds like your treatment is going really well John, that’s great.
Dr W said he doesn’t want me to have the vaccine right now. He said “No” not with my skin problems, he said acyclovir prophylaxis and upped dose when he saw photo of that lesion on my forehead from Sunday.
Sorry don’t know his reasoning to opt for the antiviral over the vaccine.
I do have lab proven IgG antibodies already to shingles right now and he added that I still can get a second bout of shingles anyway. The vaccine just gives you antibodies.
He did stop the allopurinol today (uric acid level is 5.5) and upped the acyclovir to 2g for five days. He has seen ALOT and is very sharp. I trust his judgment.
Looks like I may be getting that second bout of shingles but it has subdued by increasing the acyclovir. And rubbing that magic compounded cream from my derm combining gabapentin plus doxepin plus shingles plus lidocaine.
Well my skin in a nightmare. Not surprised by anything related to my skin.
I just hope the Venetoclax works next month and stops this tumor in its tracks. And leaves enough cells behind for me to have a working immune system.
Yes. That was my scenario. After BR my doctor felt I’d be better off with Acyclovir then the shingles vaccine. I’ll be one year past my last BR infusion this October and I plan to ask him if I should now have the Shingles vaccine.
For the newer folks, please remember you can have shingles without the blisters. Mine was in the form of severe headaches on one side of the head. I had only a couple of places on the same side of my face and couple in my nose and ear, same side. They were not painful or itchy. I went to the doctor and told him I thought I had a sinus infection and he took one look at me and said it was shingles, due to a palsy on the same side of the face (Ramsey Hunt Syndrome). I got mine just before my CLL diagnosis. And you can get them again. Also some people have continuing pain forever. Have been on acyclovir since start of treatment two years ago. So far so good. Keeping fingers and toes crossed! Good luck John and I hope the upped acyclovir keeps them from paying you a return visit!
Thank you BeckyLUSA, I was unaware of that fact. I had shingles that covered my entire left torso with the visible rash years before CLL diagnosis. My CLL specialist continues to advise against the Shingrex vaccine for all of his immunocompromised patients. It never occurred to me that it could be blister free. That is scary to consider, but something to be alert to.
How awful Becky! Sounds just horrible in your case. The sad part is how is anybody going to recognize it when it isn’t presenting the way it presents in immunocompetent people. I think we should have a rule on this website that if you get a skin lesion that it is SHINGLES until proven otherwise. Shingles is so risky because it can disseminate in CLL and go into your brain or your eye and even kill you or blind you.
Just awful!
The skin lesions are resolving in my case and so grateful for that. So grateful my derm and my CLL specialist were in agreement to increase my dose on acyclovir and on top of things. No pain and no scars this time like the last time.
I believe you are correct about it is probably Valcyclovir. I am at MDACC now and saw Dr Wierda. I’m getting infused with Gazyva and he put me on Valcyclovir and Allopurinol.
I received both Shingrix shots last year and reminded him of it. His reply was that was great but we don’t know if it will work.
You are in good hands and they can and will handle all possible complications and issues that may arise from venetoclax. It is very powerful which I experienced myself causing severe neutropenia at times. However, neulasta took care of it and I could resume full dose and acalabrutinib after a pause of 1 week. Shingles for us is a serious issue. My doctor wanted me to take the vaccine but continues to keep me on acyclovir prophylaxis throughout my treatment phase. Same likely applies to you. All the best
For me the platelet drop occurred with the Gazyva, but returned to normal within a week.
After the venetoclax was introduced I remained within range until 90 days into the 400mg venetoclax. At that time I acquired neutropenia, and I was given a G-CSF.
The G-CSF that I was given is Zarxio. After about 3 hours the Zarxio caused me to have 8 hours of significant bone pain. Within 18 hours I had no other side affects, and my neutrophils went up to 6.7. At about 2 1/2 moths after the injection my neutrophils dropped to 1.3. It has been a month since the last check up, and I will be getting checked tomorrow to see if I my neutrophils continue to drop or if they have recovered.
As for the shingles, I am sorry to hear that yours have flared up. I was able to get shingrix 5 months prior to treatment, and so far it has worked.
Neutrophils at 1.04 yesterday, and all other number in range except WBC & LY respectively.
Decided to wait on G-CSF until after BMB due to slow ANC regression, down to 1.04 from 1.3 over six weeks.
Month 9 of O + V Trial = Moderately stable grade 2 neutropenia at month 7 of full dose venetoclax in my case. 59 years, unmutated IGHV-CD20-CD38, overall good health, no co-morbidities.
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