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Cutaneous T cell lymphoma (CTCL)
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Newly diagnosed and hoping for a bit of advice
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Pdaquinas
in
CLL Support
4 years ago
Anyone have experience with Venclexta capped at 200 mg?
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
Flute117
in
CLL Support
4 years ago
Occasional sore tongue
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
Karenjaninaz
in
PMRGCAuk
4 years ago
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Omg how do some doctors get there degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Pernicious Anaemia Society
4 years ago
Omg how do some doctors get a degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Thyroid UK
4 years ago
When to expect a reoccurance of large B cell lymphoma and what is the treatment?
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
Dlindquist54
in
Non Hodgkin's Lymphoma Friends
4 years ago
MDS and AML
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
sportydad
in
Leukaemia Support
4 years ago
Ntpobnp blood test
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Jalola
in
British Heart Foundation
4 years ago
Hi, I'm 20 years old. I have sickle cell disorder. But what bothers me most is that my eyes is always yellow, and it makes me feel shy.
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
Claregie
in
Sickle Cell Society
4 years ago
Rituxan
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Vintagemama
in
CLL Support
4 years ago
Car-T and a bone marrow transplant
Is someone in their late 70's and older too old to have Car-T therapy or a bone marrow transplant?
Is someone in their late 70's and older too old to have Car-T therapy or a bone marrow transplant?
Bmarbler
in
CLL Support
4 years ago
Brain Inflammation
Last week I completed the MIN-102 trial which concluded with an MRI. The next day I received a call from the neurologist saying there are changes from the last MRI (9/19) and what is brain inflammation. She felt it urgent enough to prompt a video visit with me and my neurologist. I got the radiologist
Last week I completed the MIN-102 trial which concluded with an MRI. The next day I received a call from the neurologist saying there are changes from the last MRI (9/19) and what is brain inflammation. She felt it urgent enough to prompt a video visit with me and my neurologist. I got the radiologist
SongStream
in
AMN EASIER
4 years ago
New question regarding criteria
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
JennaShi
in
LUPUS UK
4 years ago
Hi I’m new here.
Treatment with Bendamustine and rituximab for follicular lymphoma stage 4. Very fatigued! Anyone else?
Treatment with Bendamustine and rituximab for follicular lymphoma stage 4. Very fatigued! Anyone else?
Sinsusie
in
Lymphoma Canada
4 years ago
Free Prescription home deliveries appear to have been stopped by Boots
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Harvist
in
CLL Support
4 years ago
Onion and garlic. Starting to feel sane!
I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid. About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole
I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid. About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole
RosieA
in
LUPUS UK
4 years ago
New Kid on the Block
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
BeeDee1940
in
PMRGCAuk
4 years ago
Chemo effects
Hi, 49 year old, been on watch and wait for 2 and a half years, but now have a very large node in groin. Anyway, I have to get some treatment, namely chemo and some sort of immunotherapy. I have read common effects of chemo (and I know everybody is different), but what has everybody here encountered
Hi, 49 year old, been on watch and wait for 2 and a half years, but now have a very large node in groin. Anyway, I have to get some treatment, namely chemo and some sort of immunotherapy. I have read common effects of chemo (and I know everybody is different), but what has everybody here encountered
Russ70
in
Non Hodgkin's Lymphoma Friends
4 years ago
HIGH MCV
Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it mean. Sent an e-mail to my Specialist and just waiting for a response. Below are my other labs and all feedback is welcome. Thank you all
Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it mean. Sent an e-mail to my Specialist and just waiting for a response. Below are my other labs and all feedback is welcome. Thank you all
Carrievc
in
CLL Support
4 years ago
5th Anniversary
Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my
Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my
JediReject
in
MPN Voice
4 years ago
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