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Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
26 days ago
splashsplash
UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
splashsplash
in
CLL Support
5 months ago
Radiation
I had the standard IMRT for my pca back in 2013. I was told it was a lifetime dose. Is that true with the newer forms of radiation treatment? I am faced with starting a six dose regimen of taxotere now since ADT does not seem to be working according to PSMA scans. My psa remains at 1.8 even though the
I had the standard IMRT for my pca back in 2013. I was told it was a lifetime dose. Is that true with the newer forms of radiation treatment? I am faced with starting a six dose regimen of taxotere now since ADT does not seem to be working according to PSMA scans. My psa remains at 1.8 even though the
sillyoyster
in
Advanced Prostate Cancer
9 months ago
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Stomach symptoms with your IBS?
Do you have symptoms in your stomach? Besides perhaps the intestinal symptoms (constipation, diarrhea, gas)...do you also have symptoms in your stomach/upper abdomen? I have like a gnawing sensation almost feels like you are hungry but you aren't.... Does anyone experience this or any other upper
Do you have symptoms in your stomach? Besides perhaps the intestinal symptoms (constipation, diarrhea, gas)...do you also have symptoms in your stomach/upper abdomen? I have like a gnawing sensation almost feels like you are hungry but you aren't.... Does anyone experience this or any other upper
Catsandsunsets
in
IBS Network
7 months ago
On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
29 days ago
immunotherapy
hi there Very low. My midway scans are showing my lymph nodes that grew after my huge debulking surgery in March have not shrunk with the chemotherapy and I have some nodules on peritoneum ( nothing in any organs) So he can’t say that the chemo hasn’t worked in other type cancer but it’s not doing
hi there Very low. My midway scans are showing my lymph nodes that grew after my huge debulking surgery in March have not shrunk with the chemotherapy and I have some nodules on peritoneum ( nothing in any organs) So he can’t say that the chemo hasn’t worked in other type cancer but it’s not doing
Le-gra143
in
My Ovacome
9 months ago
IBS or Redundant colon
So my symptoms started over ten years ago after a period of stress. I was later diagnosed with IBS with constipation, flatulence and abdominal pain -lower left side. The pain is only severe following a bowel movement. So I have a cycle of feeling fine until I have a bowel movement in the morning. It
So my symptoms started over ten years ago after a period of stress. I was later diagnosed with IBS with constipation, flatulence and abdominal pain -lower left side. The pain is only severe following a bowel movement. So I have a cycle of feeling fine until I have a bowel movement in the morning. It
Nico36
in
IBS Network
7 months ago
Thank you
I am overwhelmed with gratitude to all those that have responded to my post yesterday . I responded individually to the first people ( I’m not sure how to private message , I’m a bit crap with technology and my texting thumb is numb 🤦🏻♀️) But thank you all . I have had both psychology sessions
I am overwhelmed with gratitude to all those that have responded to my post yesterday . I responded individually to the first people ( I’m not sure how to private message , I’m a bit crap with technology and my texting thumb is numb 🤦🏻♀️) But thank you all . I have had both psychology sessions
PWT1
in
My Ovacome
1 month ago
I'm Back....
Hi Everyone, I was on this site several months ago and since then have been in a psychiatric hospital, been seeing a psychiatrist, had EMDR and ketamine treatments, had weekly therapy sessions and am about to try a new therapist, and have tried five different anti-depressants. I'm still struggling
Hi Everyone, I was on this site several months ago and since then have been in a psychiatric hospital, been seeing a psychiatrist, had EMDR and ketamine treatments, had weekly therapy sessions and am about to try a new therapist, and have tried five different anti-depressants. I'm still struggling
Woolybluecurl
in
Anxiety and Depression Support
1 month ago
Touchpoint Solutions for ADHD/Focus
My 8 yo daughter was diagnosed with ADHD last year. After a several month wait due to insurance and availability limitations, she is now in therapy and I think it will be very helpful for her. She continues to struggle in school. I hoping to avoid medication if I can, but I also know it will be some
My 8 yo daughter was diagnosed with ADHD last year. After a several month wait due to insurance and availability limitations, she is now in therapy and I think it will be very helpful for her. She continues to struggle in school. I hoping to avoid medication if I can, but I also know it will be some
Otter1313
in
CHADD's ADHD Parents Together
1 month ago
Iron Bisglycinate
I am in the US and looked at a number of 25 mg of iron bisglycinate products (gentle iron) on Amazon. All listed there percent of daily value (US) at 139%. Most did not list their elemental iron but two did and they listed it as 25 mg. So my apologies! My previous post which I deleted was wrong.
I am in the US and looked at a number of 25 mg of iron bisglycinate products (gentle iron) on Amazon. All listed there percent of daily value (US) at 139%. Most did not list their elemental iron but two did and they listed it as 25 mg. So my apologies! My previous post which I deleted was wrong.
SueJohnson
in
Restless Legs Syndrome
7 months ago
Glaucoma, OCT showing deterioration since starting Pred for PMR
I am on 17mgs Pred for PMR for 6 weeks. I have had glaucoma for 8yrs . At my opthalmology FU today the, OCT showed marked deterioration in one eye since March. The GCC Analysis has gone all red, when it was mildly yellow before. Has anyone else noted the same when they went on steroids? I am off for
I am on 17mgs Pred for PMR for 6 weeks. I have had glaucoma for 8yrs . At my opthalmology FU today the, OCT showed marked deterioration in one eye since March. The GCC Analysis has gone all red, when it was mildly yellow before. Has anyone else noted the same when they went on steroids? I am off for
Sillydogsmum
in
PMRGCAuk
9 months ago
Thyroid cancer
I have a close friend who’s just been diagnosed with thyroid cancer so is waiting for surgery. She has been told this is not the worst cancer to get and it will not kill her. So she is trying to be upbeat about it. Can you live normally without a thyroid please? I’d really like to give her some optimistic
I have a close friend who’s just been diagnosed with thyroid cancer so is waiting for surgery. She has been told this is not the worst cancer to get and it will not kill her. So she is trying to be upbeat about it. Can you live normally without a thyroid please? I’d really like to give her some optimistic
sidneymark70
in
Thyroid UK
9 months ago
ctDNA - signatera
has anyone had the signatera bloodwork test? It is somewhat new science and compares a current blood draw to original tumor biopsy tissue. It then look for a match and works to to detect circulating tumor dna (ctDNA) in blood. It assigns a numbers as to how much ctDNA is found. My Mets are bone only
has anyone had the signatera bloodwork test? It is somewhat new science and compares a current blood draw to original tumor biopsy tissue. It then look for a match and works to to detect circulating tumor dna (ctDNA) in blood. It assigns a numbers as to how much ctDNA is found. My Mets are bone only
Gardengirl345
in
SHARE Metastatic Breast Cancer
9 months ago
Going in for a radical Cystectomy, stopping Biologic.
Hello lovely people. My first six monthly Cystoscopy after getting the all clear from bladder cancer in January showed that the cancer was back with a vengeance. So on Monday I'll be undergoing a Radical Cystectomy. I'm OK and positive with the outlook of living without a bladder and lots of other bits
Hello lovely people. My first six monthly Cystoscopy after getting the all clear from bladder cancer in January showed that the cancer was back with a vengeance. So on Monday I'll be undergoing a Radical Cystectomy. I'm OK and positive with the outlook of living without a bladder and lots of other bits
stbernhard
in
NRAS
9 months ago
Starting Enhertu
was on Xeloda. Mets to liver and pleural cavity. Liver tumor increased slightly in size. Changing to Enhertu. More on my progress soon.
was on Xeloda. Mets to liver and pleural cavity. Liver tumor increased slightly in size. Changing to Enhertu. More on my progress soon.
Hotlantaphatz
in
SHARE Metastatic Breast Cancer
9 months ago
Biopsies and confusion
Here is my wifes Biopsys from Nov of 2020 STEATOHEPATITIS (SEE COMMENT), 'There are 9 portal tracts represented. A trichrome stain shows extensive pericellular fibrosis and bridging fibrosis. A PAS with diastase is negative for alpha-1-antitiypsin inclusions. A reticulin stain shows a maintained architecture
Here is my wifes Biopsys from Nov of 2020 STEATOHEPATITIS (SEE COMMENT), 'There are 9 portal tracts represented. A trichrome stain shows extensive pericellular fibrosis and bridging fibrosis. A PAS with diastase is negative for alpha-1-antitiypsin inclusions. A reticulin stain shows a maintained architecture
ceward204
in
British Liver Trust
5 months ago
The Bone-Marrow-Transplant Revolution
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
Hidden
in
CLL Support
1 month ago
Tips and Tricks for Panic Attacks
I’ve been through CBT, grounding, self visualization, etc. I know about rubber bands on my wrists to snap, 333, breathing exercises, sticking my face in ice water, aromatherapy. Are there other methods people are using to help get over active panic attacks? Just want to help each other. Thanks
I’ve been through CBT, grounding, self visualization, etc. I know about rubber bands on my wrists to snap, 333, breathing exercises, sticking my face in ice water, aromatherapy. Are there other methods people are using to help get over active panic attacks? Just want to help each other. Thanks
PanickedinFL
in
Anxiety and Depression Support
5 months ago
Fatigue
Good Day Everyone My question is, should I be feeling fatigued with lymphocytes around 43 and haemoglobin at 12.1 g/dl or could the fatigue be caused by some other blood deficiency such as iron or vitamin B12. Thanks very much Ken
Good Day Everyone My question is, should I be feeling fatigued with lymphocytes around 43 and haemoglobin at 12.1 g/dl or could the fatigue be caused by some other blood deficiency such as iron or vitamin B12. Thanks very much Ken
Buttons42
in
CLL Support
7 months ago
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