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Update on my CLL diagnosis
Hello, I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with extensive bone marrow involvement, trisomy 12, p53 wild-type, IgHV-mutated, Rai stage 3. My oncologist at the Cancer Center put me on the O and V treatment which started in Dec 2022. I finished the O in May 2023 and the
Hello, I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with extensive bone marrow involvement, trisomy 12, p53 wild-type, IgHV-mutated, Rai stage 3. My oncologist at the Cancer Center put me on the O and V treatment which started in Dec 2022. I finished the O in May 2023 and the
tenniselbowz
in
CLL Support
19 days ago
Still uMRD 1 year later after fixed duration A&O combo
Happy to share that after finishing treatment 12 months ago, my new Clonoseq results still show zero residual clonal cells from a 3.4 million sample! Glad to be off medication of any kind for a year. (with the exception of Acyclovir.) It’s a great feeling.
Happy to share that after finishing treatment 12 months ago, my new Clonoseq results still show zero residual clonal cells from a 3.4 million sample! Glad to be off medication of any kind for a year. (with the exception of Acyclovir.) It’s a great feeling.
Kvb-texas
in
CLL Support
24 days ago
HSV 1
Hello. I need some advice. My brother was diagnosed with HSV 1 Encephalitis on January 12. And on January 9 he had an epi attack. He was in the hospital for a month, he was treated with acyclovir. The last lumbar puncture was negative for the virus. He has been receiving home treatment since February
Hello. I need some advice. My brother was diagnosed with HSV 1 Encephalitis on January 12. And on January 9 he had an epi attack. He was in the hospital for a month, he was treated with acyclovir. The last lumbar puncture was negative for the virus. He has been receiving home treatment since February
Recnik
in
Encephalitis Society
25 days ago
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Suspected Vulvadynia? Severe and constant clitoris pain/burning with some pain underneath. All exacerbated by sitting/walking/weeing.
Me and my husband had sex over 6 weeks ago a few days after I began with burning type pain mainly at the front around my clitoris but it did seem to radiate underneath. I began drinking lots of water thinking I have cystitis. 1 week later I saw a GP and although my urine sample was negative to any
Me and my husband had sex over 6 weeks ago a few days after I began with burning type pain mainly at the front around my clitoris but it did seem to radiate underneath. I began drinking lots of water thinking I have cystitis. 1 week later I saw a GP and although my urine sample was negative to any
Redskytonight
in
Pelvic Pain Support Network
27 days ago
Remission but suddenly extreme night sweats
I received the good news that I am in complete remission......no cancer cells in my blood.... but unfortunately I was just diagnosed with Gastritis due to the Venetoclax and Aciclovir. It's very painful but after stopping all my cancer medication the stomach pains and diarrhoea are easing off. But
I received the good news that I am in complete remission......no cancer cells in my blood.... but unfortunately I was just diagnosed with Gastritis due to the Venetoclax and Aciclovir. It's very painful but after stopping all my cancer medication the stomach pains and diarrhoea are easing off. But
MalcT
in
CLL Support
1 month ago
Solutions needed to manage nerve pains ( Post herpetic neuralgia ) after shingles .
I was diagnosed of CLL in 2021. Had FCR as first line treatment. Was on remission for about a year before relapse. Currently on Ibrutinib since 5 months now. I had shingles on my left leg about 3 months ago. Was treated with Acyclovir. The sores and blisters have gone but the nerve pains( especially
I was diagnosed of CLL in 2021. Had FCR as first line treatment. Was on remission for about a year before relapse. Currently on Ibrutinib since 5 months now. I had shingles on my left leg about 3 months ago. Was treated with Acyclovir. The sores and blisters have gone but the nerve pains( especially
Oldscores1
in
CLL Support
2 months ago
Aciclovir as prevention for shingles
I wish to express my deepest thanks to all fellow members who have responded to my recent enquiry. There has been consensus in all replies confirming that prescribing Aciclovir is standard practice.
I wish to express my deepest thanks to all fellow members who have responded to my recent enquiry. There has been consensus in all replies confirming that prescribing Aciclovir is standard practice.
RamsesII
in
CLL Support
2 months ago
Herpes (or acyclovir usage) affecting implantation after ivf embryo transfer?
I have had herpes for about 10 years. I have noticed more outbreaks during stims. I've already had 2 failed transfers and am worried both that having herpes and /or taking acyclovir will affect implantation for my last transfer. I've read some conflicting studies on acyclovir and it's effect on implantation
I have had herpes for about 10 years. I have noticed more outbreaks during stims. I've already had 2 failed transfers and am worried both that having herpes and /or taking acyclovir will affect implantation for my last transfer. I've read some conflicting studies on acyclovir and it's effect on implantation
Norregirl
in
Fertility Network UK
2 months ago
Replacing Acyclovir.
I’m trying to keep my one kidney from all medications that cause harm. Does anyone know of an antiviral that I should use instead of acyclovir? Thank you.
I’m trying to keep my one kidney from all medications that cause harm. Does anyone know of an antiviral that I should use instead of acyclovir? Thank you.
Fredismydog
in
Non Hodgkin's Lymphoma Friends
2 months ago
a safe antiviral.
Being that I was born with Solitary kidney and started on acyclovir when I started chemo, I’m trying to find an antiviral that doesn’t harm my kidney. Has anyone got some leads for me? Thank you.
Being that I was born with Solitary kidney and started on acyclovir when I started chemo, I’m trying to find an antiviral that doesn’t harm my kidney. Has anyone got some leads for me? Thank you.
Fredismydog
in
Kidney Disease
2 months ago
acyclovir and kidney care
I have follicular lymphoma. I’m not interested in taking acyclovir as I was born with only one kidney. I’m wondering if anyone knows of an antiviral that doesn’t harm the renal function that can replace acyclovir? thank you.
I have follicular lymphoma. I’m not interested in taking acyclovir as I was born with only one kidney. I’m wondering if anyone knows of an antiviral that doesn’t harm the renal function that can replace acyclovir? thank you.
Fredismydog
in
CLL Support
2 months ago
One year stem cell transplant anniversary
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
Scaredy_cat
in
MPN Voice
3 months ago
WBC and Neutrophils count dropped
Hello, I was diagnosed with CLL back in Nov 2022 and was on the O&V treatment plan. I finished the O in May 2023 but continued with the V, levofloxacin and acyclovir for the rest of the year and my blood counts were good and neutrophils count was good. My blood tests in Dec were all normal and my
Hello, I was diagnosed with CLL back in Nov 2022 and was on the O&V treatment plan. I finished the O in May 2023 but continued with the V, levofloxacin and acyclovir for the rest of the year and my blood counts were good and neutrophils count was good. My blood tests in Dec were all normal and my
tenniselbowz
in
CLL Support
3 months ago
internal shingles
hi, I’ve been diagnosed with internal shingles and it’s the most painful thing I have ever experienced. I’m on my last day of Aciclovir, I’m taking paracetamol and codeine during the day and 3 amitriptyline at night, this has been going on for over a week. Is this normal? Any advice gladly accepted
hi, I’ve been diagnosed with internal shingles and it’s the most painful thing I have ever experienced. I’m on my last day of Aciclovir, I’m taking paracetamol and codeine during the day and 3 amitriptyline at night, this has been going on for over a week. Is this normal? Any advice gladly accepted
Mongoose123
in
PMRGCAuk
4 months ago
Unknown Cause Encephalitis
Hi guys! I'm new here :) I initially had tonsillitis or strep throat for around 3 weeks before I ended up in the hospital for encephalitis (or meningoencephalitis). The day of, my roommate took me to the doctor and then the ER where everyone thought that I had overdosed on drugs due to the way I was
Hi guys! I'm new here :) I initially had tonsillitis or strep throat for around 3 weeks before I ended up in the hospital for encephalitis (or meningoencephalitis). The day of, my roommate took me to the doctor and then the ER where everyone thought that I had overdosed on drugs due to the way I was
bluepizza123
in
Encephalitis Society
4 months ago
Shingles
Yesterday I had a headache and sore throat, and unusually a bit of a chilly feeling, this morning the rash is back. Same as before but not as bad so the GP was right the Shingrex vaccine is not that effective but it’s better than nothing. At he said 74% at least it provides protection for the majority
Yesterday I had a headache and sore throat, and unusually a bit of a chilly feeling, this morning the rash is back. Same as before but not as bad so the GP was right the Shingrex vaccine is not that effective but it’s better than nothing. At he said 74% at least it provides protection for the majority
medway-lady
in
NRAS
6 months ago
GCA, varicella zoster and PMR?
I found the referenced paper (provenance unclear) fascinating. Does anyone know of the use of acyclovir to treat GCA or PMR? I couldn't find anything in the search tool. I know there is speculation about a virus as the cause of these related diseases, but I didn't think a virus had been identified. This
I found the referenced paper (provenance unclear) fascinating. Does anyone know of the use of acyclovir to treat GCA or PMR? I couldn't find anything in the search tool. I know there is speculation about a virus as the cause of these related diseases, but I didn't think a virus had been identified. This
papadapadoo
in
PMRGCAuk
7 months ago
Brukinsa/Zanubrutinib slow working at present time
I started treatment in early May with Zanubrutinib but because of severe stomach pain with it and acyclovir stopped it after 6 weeks so that an endoscopy could be done. Wbc started at 212,000 and went up to 300,000 in 2 1/2 weeks. 2 weeks later down to 165,000. The time off was almost 3 weeks. Started
I started treatment in early May with Zanubrutinib but because of severe stomach pain with it and acyclovir stopped it after 6 weeks so that an endoscopy could be done. Wbc started at 212,000 and went up to 300,000 in 2 1/2 weeks. 2 weeks later down to 165,000. The time off was almost 3 weeks. Started
Bethsaida
in
CLL Support
8 months ago
Shingles
My husband has had really bad shingles for two weeks now, the rash is clearing up however he's still in terrible pain, he was given Acyclovir and he's taking co-codamol for the pain. He's on 200mg venetoclax daily, he had to drop his dose as he wasn't tolerating 400mg daily, he will be two years on venetoclax
My husband has had really bad shingles for two weeks now, the rash is clearing up however he's still in terrible pain, he was given Acyclovir and he's taking co-codamol for the pain. He's on 200mg venetoclax daily, he had to drop his dose as he wasn't tolerating 400mg daily, he will be two years on venetoclax
Alfiebhoy
in
CLL Support
8 months ago
Shingles - does anyone have any advice?
morning all It’s been quite a ride…my ear started bothering me a bit on Monday . Just a small uptick in tinnitus which I tried to ignore. By Tuesday I was a bit worried because I have had total hearing loss in the past due to auto immune attack which was only (partially) restored due to mega doses of
morning all It’s been quite a ride…my ear started bothering me a bit on Monday . Just a small uptick in tinnitus which I tried to ignore. By Tuesday I was a bit worried because I have had total hearing loss in the past due to auto immune attack which was only (partially) restored due to mega doses of
Bon1
in
NRAS
8 months ago
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