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Experiences with
Chorionic villus sampling (CVS)
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46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Flitzebogen
in
CLL Support
2 years ago
IVIG opinion
I am at the clinic and I’ve been offered IVIG (£2500) today as my NK cells are elevated. Is there any point if my hcg does not rise well? I am almost 6 weeks, I had intralipids last week before my NK test results came back, just to be on the safe side and act immediately. Unfortunately I didn’t start
I am at the clinic and I’ve been offered IVIG (£2500) today as my NK cells are elevated. Is there any point if my hcg does not rise well? I am almost 6 weeks, I had intralipids last week before my NK test results came back, just to be on the safe side and act immediately. Unfortunately I didn’t start
FrancyItaly
in
Fertility Network UK
2 years ago
Darn it and botheration 😷
Hi runny folks, well I made it through two runs of week 4 and managed it pretty well - although I felt pretty tired all day after my second run on Friday. Felt happy enough to take a photo of the flowers coming through! Woke up on Saturday with my sinusitis feeling like it was turning into the beginnings
Hi runny folks, well I made it through two runs of week 4 and managed it pretty well - although I felt pretty tired all day after my second run on Friday. Felt happy enough to take a photo of the flowers coming through! Woke up on Saturday with my sinusitis feeling like it was turning into the beginnings
grumpyoldgirl
Graduate
in
Couch to 5K
2 years ago
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The dream is over already!
The title says it all. I only had a small hcg growth and hight NK cells. I’m on steroids and will do intralipids again tomorrow but I feel we have already lost this battle. Not only I have PCOS and have no hope to conceive naturally, I also needed to suffer from recurrent miscarriage, I have a heterozygous
The title says it all. I only had a small hcg growth and hight NK cells. I’m on steroids and will do intralipids again tomorrow but I feel we have already lost this battle. Not only I have PCOS and have no hope to conceive naturally, I also needed to suffer from recurrent miscarriage, I have a heterozygous
FrancyItaly
in
Fertility Network UK
2 years ago
Why is pneumonia so often fatal to CLL patients?
Why is pneumonia so often a cause of death among CLL patients? Wondering today, for many reasons. In part because I was out in extremely cold weather for a few hours and was at the same time sweating from some hard work. A PET scan a while back showed a small pocket of "maybe" infection. not confirmed
Why is pneumonia so often a cause of death among CLL patients? Wondering today, for many reasons. In part because I was out in extremely cold weather for a few hours and was at the same time sweating from some hard work. A PET scan a while back showed a small pocket of "maybe" infection. not confirmed
humaniquarian
in
CLL Support
2 years ago
Macular oedema and steroids
I have diabetic macular oedema and my opthamologist said today that although my eyes are not getting any worse my right eye maybe needs some laser. She said she thought it wasn’t the diabetes that was the problem, I am in remission with a hba1c of 37 but the steroids. Any thoughts on this please. My
I have diabetic macular oedema and my opthamologist said today that although my eyes are not getting any worse my right eye maybe needs some laser. She said she thought it wasn’t the diabetes that was the problem, I am in remission with a hba1c of 37 but the steroids. Any thoughts on this please. My
Koalajane
in
PMRGCAuk
2 years ago
Statement from NHS digital acknowledging CLL error in PCR codes
“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement
“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement
Bartlet
in
CLL Support
2 years ago
5 weeks pregnant, light bleeding but line getting darker - chemical?
Hi lovely people ❤️ I had my (first ever) BFP after ICSI two days ago at 13dp3dt, tested again yesterday which was positive as well. Me and my husband were over the moon, immediately started dreaming and planning for our future like two morons.. even told his mum who knew we were waiting for results
Hi lovely people ❤️ I had my (first ever) BFP after ICSI two days ago at 13dp3dt, tested again yesterday which was positive as well. Me and my husband were over the moon, immediately started dreaming and planning for our future like two morons.. even told his mum who knew we were waiting for results
MWC30
in
Fertility Network UK
2 years ago
*sensitive* Chemical?
Hello all, Feeling more anxious this morning than ever. My FET was on 27th, OTD tomorrow. The wind howling kept me up last night so I did a test just before midnight (9dp top pic) and again this morning at 7.45). In my last FET i tested a day early and the line was much stronger (albeit the pregnancy
Hello all, Feeling more anxious this morning than ever. My FET was on 27th, OTD tomorrow. The wind howling kept me up last night so I did a test just before midnight (9dp top pic) and again this morning at 7.45). In my last FET i tested a day early and the line was much stronger (albeit the pregnancy
DG2022
in
Fertility Network UK
2 years ago
Please help with advice .. think I’m miscarrying
Hi everyone, I’m 6 weeks pregnant now (or was) and as some of you know have a history of 6 miscarriages. I had a tiny bit of spotting around week 3 but then had three HCG blood tests and the numbers were great and doubling. Skip to this morning I spoke up to quite a bit of red brown blood blood (not
Hi everyone, I’m 6 weeks pregnant now (or was) and as some of you know have a history of 6 miscarriages. I had a tiny bit of spotting around week 3 but then had three HCG blood tests and the numbers were great and doubling. Skip to this morning I spoke up to quite a bit of red brown blood blood (not
Corchi
in
Fertility Network UK
2 years ago
Please help with advice
Hi everyone, I’m 6 weeks pregnant and as some of you know have a history of 6 miscarriages. I had a tiny bit of spotting around week 3 but then had three HCG blood tests and the numbers were great and doubling. Skip to this morning I spoke up to quite a bit of red brown blood blood (not pale and little
Hi everyone, I’m 6 weeks pregnant and as some of you know have a history of 6 miscarriages. I had a tiny bit of spotting around week 3 but then had three HCG blood tests and the numbers were great and doubling. Skip to this morning I spoke up to quite a bit of red brown blood blood (not pale and little
Corchi
in
British Pregnancy Advisory Service
2 years ago
Please please offer your thoughts
Hi everyone, I’m 6 weeks pregnant and as some of you know have a history of 6 miscarriages. I had a tiny bit of spotting around week 3 but then had three HCG blood tests and the numbers were great and doubling. Skip to this morning I spoke up to quite a bit of red brown blood blood (not pale and little
Hi everyone, I’m 6 weeks pregnant and as some of you know have a history of 6 miscarriages. I had a tiny bit of spotting around week 3 but then had three HCG blood tests and the numbers were great and doubling. Skip to this morning I spoke up to quite a bit of red brown blood blood (not pale and little
Corchi
in
Fertility, Miscarriage & IVF Support
2 years ago
CLL patient cured a decade after gene therapy
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
WinJ3
in
CLL Support
2 years ago
pneumonia jab expereiences
Hi all - has anyone had experience of the pneumonia jab and if so - any side effects that want to share?
Hi all - has anyone had experience of the pneumonia jab and if so - any side effects that want to share?
lostherpocket
in
Thyroid UK
2 years ago
HCG not doubling and Intralipids (I fear a 3rd miscarriage)
I have just received bad news. On Wednesday at 15pt my levels were 2016, today at 17pt is only 3309. This means it’s another miscarriage doesn’t it? It would be my third. I’m running back into London to have intralipids as I guess my immunity test are not looking good. They said it would support it.
I have just received bad news. On Wednesday at 15pt my levels were 2016, today at 17pt is only 3309. This means it’s another miscarriage doesn’t it? It would be my third. I’m running back into London to have intralipids as I guess my immunity test are not looking good. They said it would support it.
FrancyItaly
in
Fertility Network UK
2 years ago
Blood cancer uk explain why some CLLers are finally getting priority PCR tests
❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test 📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told
❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test 📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told
Bartlet
in
CLL Support
2 years ago
can't get a letter for a priority PCR with CLL.
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
CrazyDaisy68
in
CLL Support
2 years ago
ME/CFS discussed in terms of thyroid dysfunction
Interesting papers are coming in, in droves almost. This downloadable paper discusses links between thyroid function in critical illness and ME/CFS. Title and Abstract here:
PERSPECTIVE article
Front. Med., 08 March 2022 | https://doi.org/10.3389/fmed.2022.818728
Perspective: Drawing
Interesting papers are coming in, in droves almost. This downloadable paper discusses links between thyroid function in critical illness and ME/CFS. Title and Abstract here:
PERSPECTIVE article
Front. Med., 08 March 2022 | https://doi.org/10.3389/fmed.2022.818728
Perspective: Drawing
diogenes
in
Thyroid UK
2 years ago
Tacrolimus?
Hi guys, Can anyone tell me if 14mg of tacrolimus everyday after 3 months post transplant is normal? I know from other consultants that I have slight rejection. I have 1 consultant who will not give me an answer to "what are my blood results". He says everything is fine and there is nothing to worry
Hi guys, Can anyone tell me if 14mg of tacrolimus everyday after 3 months post transplant is normal? I know from other consultants that I have slight rejection. I have 1 consultant who will not give me an answer to "what are my blood results". He says everything is fine and there is nothing to worry
Zukosmile07
in
British Liver Trust
2 years ago
Evidence omicron risk is higher for blood cancer patients
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
Bartlet
in
CLL Support
2 years ago
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