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PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
7 months ago
angular cheilitis
I’ve suffer a lot from this I get it around 3/4 times a year but usually lasts about a week. I’m on my third week struggling with this and can’t find a lip balm or treatment. I heard Daktarin oral gel but it’s sold out everywhere and the pharmacy said they even finding it hard to get it in for people
I’ve suffer a lot from this I get it around 3/4 times a year but usually lasts about a week. I’m on my third week struggling with this and can’t find a lip balm or treatment. I heard Daktarin oral gel but it’s sold out everywhere and the pharmacy said they even finding it hard to get it in for people
Ladybitsandbobs
in
NRAS
7 months ago
Capivasertib, fulvestrant
Ibrance 100 mg. Letrozole seemed to decrease 7 areas of Mets. MRI to pelvic, lumber shows progression of Lumbar L1 ,and lesions right pelvic bone. Nov 2023. SUV increase 5.6 to 5.9? Now Onc suggesting to capivasertib+fulvestrant but don't know yet if it's in addtion to or replacing Ibrance, Letrozole
Ibrance 100 mg. Letrozole seemed to decrease 7 areas of Mets. MRI to pelvic, lumber shows progression of Lumbar L1 ,and lesions right pelvic bone. Nov 2023. SUV increase 5.6 to 5.9? Now Onc suggesting to capivasertib+fulvestrant but don't know yet if it's in addtion to or replacing Ibrance, Letrozole
Hidden
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SHARE Metastatic Breast Cancer
3 months ago
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PIC - Punctate Inner Choroidopathy
Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others
Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others
Rome2023
in
Macular Society
7 months ago
small eyey
I don’t look like my eyes are normal size but the consultant says they are small, not deep and short ??? Says cataract op would be difficult when the time comes . Says further laser surgery not possible. has anyone else been told this ? I worries me for the future
I don’t look like my eyes are normal size but the consultant says they are small, not deep and short ??? Says cataract op would be difficult when the time comes . Says further laser surgery not possible. has anyone else been told this ? I worries me for the future
Sufitzy
in
Glaucoma UK
7 months ago
Trodelvy after one year update
Hello and please excuse the lengthy post as I have a lot bouncing around in my head. I want to review my treatment path so far: I was diagnosed denovo in September 2019. Mets to lungs and bones. Started with Ibrance and Letrozole and lungs cleared immediately bones were fairly stable and CA15 dropped
Hello and please excuse the lengthy post as I have a lot bouncing around in my head. I want to review my treatment path so far: I was diagnosed denovo in September 2019. Mets to lungs and bones. Started with Ibrance and Letrozole and lungs cleared immediately bones were fairly stable and CA15 dropped
Iwasborntodothis
in
SHARE Metastatic Breast Cancer
3 months ago
Hi, Im new here! Stage IV Ovarian Ca champion
Hello, My name is Nicole. Im 42 and live in Florida with my husband and our two children 8&9. i had battled and won stage I breast cancer when I was 26 years old in 2009. I had been complaining of all the symptoms in 2022 only to be brushed off and not taken seriously. When my OBGYN took me seriously
Hello, My name is Nicole. Im 42 and live in Florida with my husband and our two children 8&9. i had battled and won stage I breast cancer when I was 26 years old in 2009. I had been complaining of all the symptoms in 2022 only to be brushed off and not taken seriously. When my OBGYN took me seriously
Nlehrer
in
SHARE Ovarian Cancer Support
3 months ago
Xpo1 significance
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
NewCll
in
CLL Support
3 months ago
Primary Peritoneal Cancer
I was diagnosed with PPC stage III C in April of 2023. After consulting with onocologist and gynecologist/oncologist it was decided to do 3 rounds of chemotherapy then debulking surgery followed by 3 more rounds of chemo. After first 3 rounds I had a very positive response with major shrinkage of tumor
I was diagnosed with PPC stage III C in April of 2023. After consulting with onocologist and gynecologist/oncologist it was decided to do 3 rounds of chemotherapy then debulking surgery followed by 3 more rounds of chemo. After first 3 rounds I had a very positive response with major shrinkage of tumor
Hockeymom52
in
My Ovacome
3 months ago
How to taper off 15mg Lansoprazole
Hi I have been on lansoprazole for about 2.5 months now and about to try come off them. I am on 15mg. I've started by taking one and then missing one the next day then taking another but I've already got acid reflux and this is only the second one I've missed. Do I need to do it slower? The docs said
Hi I have been on lansoprazole for about 2.5 months now and about to try come off them. I am on 15mg. I've started by taking one and then missing one the next day then taking another but I've already got acid reflux and this is only the second one I've missed. Do I need to do it slower? The docs said
HappyCanola
in
PMRGCAuk
9 months ago
2.5 year old, suddenly bedwetting
Hi all, my 2.5 year old has been night potty trained for 5 months with max 2 or 3 wee accidents in that time, but suddenly started bedwetting practically every night for a Week.She has always struggled with infrequent poos, likely caused by withholding. My gp agrees the bedwetting is likely due to impacted
Hi all, my 2.5 year old has been night potty trained for 5 months with max 2 or 3 wee accidents in that time, but suddenly started bedwetting practically every night for a Week.She has always struggled with infrequent poos, likely caused by withholding. My gp agrees the bedwetting is likely due to impacted
Blando
in
ERIC
7 months ago
hand warming creams
hello So I’m a long term suffer from raynauds (secondary) keeping hands warm is a challenge. I’ve got various gloves and hand warms but there are times when I can’t wear gloves or when the gloves aren’t effective. I’ve seen various hand creams to at say they warm the hands but has anyone tried any and
hello So I’m a long term suffer from raynauds (secondary) keeping hands warm is a challenge. I’ve got various gloves and hand warms but there are times when I can’t wear gloves or when the gloves aren’t effective. I’ve seen various hand creams to at say they warm the hands but has anyone tried any and
Enjoyswalking
in
Scleroderma & Raynaud's UK (SRUK)
7 months ago
Intraductal Prostate Carcinoma
Just wanted to say hello as this is a new journey. Hopefully most of you are experiencing success better than anticipated from the onset. . I share many of your diagnosis but for any of you out there with the more (rare) - intraductal Carcinoma diagnosis I'd love to see if it's possible to connect
Just wanted to say hello as this is a new journey. Hopefully most of you are experiencing success better than anticipated from the onset. . I share many of your diagnosis but for any of you out there with the more (rare) - intraductal Carcinoma diagnosis I'd love to see if it's possible to connect
bdrakes
in
Advanced Prostate Cancer
3 months ago
Further update Gallbladder removal
So I am home after a long day. Had to get up at 5am to be at hospital by 7am. All the usual preps and questions then operation took place at 10am. Because I have an LBBB (No underlying heart issues) They were extra careful with monitoring so had an extra canula thingy in my inner wrist to monitor heart
So I am home after a long day. Had to get up at 5am to be at hospital by 7am. All the usual preps and questions then operation took place at 10am. Because I have an LBBB (No underlying heart issues) They were extra careful with monitoring so had an extra canula thingy in my inner wrist to monitor heart
Manderson27
in
British Liver Trust
7 months ago
Further info on blood panel
Hello! I posted a couple of weeks back with some questions about low B12 investigations and was about to have a very full and detailed blood panel. I've got some further info from my blood tests. I don't have a copy yet, they're on the way, so I'll have to be vague about actual numbers for some of them
Hello! I posted a couple of weeks back with some questions about low B12 investigations and was about to have a very full and detailed blood panel. I've got some further info from my blood tests. I don't have a copy yet, they're on the way, so I'll have to be vague about actual numbers for some of them
Onefish
in
Pernicious Anaemia Society
11 months ago
Fostair - lactose-free?
I just had a telephone consult with my respiratory consultant. As the steroid in my Seretide inhaler is thought likely to be the cause of my recently diagnosed adrenal insufficiency, he proposes to switch me from Seretide to Fostair as the steroid in that is less potent. I am seeing conflicting information
I just had a telephone consult with my respiratory consultant. As the steroid in my Seretide inhaler is thought likely to be the cause of my recently diagnosed adrenal insufficiency, he proposes to switch me from Seretide to Fostair as the steroid in that is less potent. I am seeing conflicting information
JumpJiving
in
Asthma Community Forum
7 months ago
Varicose veins with scleroderma
Are there any other LSSc people out there also suffering from varicose veins? At my last check up with Royal Free I pointed out lots of new burst veins/ thread veins in my legs. They said it as early varicose veins, but they would ask my GP to refer me to vascular specialist close to me. RF implied
Are there any other LSSc people out there also suffering from varicose veins? At my last check up with Royal Free I pointed out lots of new burst veins/ thread veins in my legs. They said it as early varicose veins, but they would ask my GP to refer me to vascular specialist close to me. RF implied
LadyTrundle
in
Scleroderma & Raynaud's UK (SRUK)
7 months ago
Polyps found in Endoscopy
Hi, can anyone advise on polops found Endoscopy. Have Auto immune atrophic gastritis with metaplasia, thanks
Hi, can anyone advise on polops found Endoscopy. Have Auto immune atrophic gastritis with metaplasia, thanks
Bilbao
in
Pernicious Anaemia Society
9 months ago
InkMune clinical trial goes on: second cohort is being treated
In phase 1/2 CaRe PC trial (NCT06056791) evaluating INKmune, a biologic therapy In its announcement on Monday, INmune said it successfully completed nine INKmune administrations in the outpatient setting within the first cohort in the trial. None of the patients who have received INKmune so far have
In phase 1/2 CaRe PC trial (NCT06056791) evaluating INKmune, a biologic therapy In its announcement on Monday, INmune said it successfully completed nine INKmune administrations in the outpatient setting within the first cohort in the trial. None of the patients who have received INKmune so far have
Maxone73
in
Advanced Prostate Cancer
3 months ago
Fibre in the diet
I have probably written about this before, but I am really unsure where to go. So it appears that lots of things play up with my stomach particularly fibre. I tried porridge (smooth quick cook) this within half an hour will give me stomach ache and many trips to the toilet tmi. I then tried peanut
I have probably written about this before, but I am really unsure where to go. So it appears that lots of things play up with my stomach particularly fibre. I tried porridge (smooth quick cook) this within half an hour will give me stomach ache and many trips to the toilet tmi. I then tried peanut
huggit
in
IBS Network
11 months ago
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