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Bad 2017, must get better.
A well sorry I've not been on in ages, health and personal life has been bad this year. Since January this year my stomache has been really up set, had cameras put up and down everywhere, biopsies taken from colon-stomache. I had a groath removed from my colon last year-non cancerious then this yesr
A well sorry I've not been on in ages, health and personal life has been bad this year. Since January this year my stomache has been really up set, had cameras put up and down everywhere, biopsies taken from colon-stomache. I had a groath removed from my colon last year-non cancerious then this yesr
1968
in
Lung Conditions Community Forum
7 years ago
Friend or not a friend??
Hi Folks, I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on about my treatment with Hydroxy, and started to tell me that I should try and eliminate it from my life as it very toxic, and can cause cancers to spread, well I
Hi Folks, I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on about my treatment with Hydroxy, and started to tell me that I should try and eliminate it from my life as it very toxic, and can cause cancers to spread, well I
Superwoman
in
MPN Voice
7 years ago
Just diagnosed
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
TXteacher
in
CLL Support
7 years ago
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Help! I have had a lymph node removed with biopsy. Came back metastatic lymph node. This is second one. Was behind my ear. First tumor is still waiting for help. First tumor came up out of no where. Size of a good golf ball. Keeps enlarging to where now it is sort of purple because it is pushing on the
Help! I have had a lymph node removed with biopsy. Came back metastatic lymph node. This is second one. Was behind my ear. First tumor is still waiting for help. First tumor came up out of no where. Size of a good golf ball. Keeps enlarging to where now it is sort of purple because it is pushing on the
Manzanopeek17
in
CLL Support
7 years ago
Epo. London mpn day
I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which
I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which
Rachelthepotter
in
MPN Voice
7 years ago
This is worth a look
Hi all, I am still fairly new to ET and pretty illiterate when it comes to the workings of the human body, so I have been trying to educate myself to better understand what is happening. In my searches I happened across a really helpful YouTube video of an on-line lecture by Khan University Medical (
Hi all, I am still fairly new to ET and pretty illiterate when it comes to the workings of the human body, so I have been trying to educate myself to better understand what is happening. In my searches I happened across a really helpful YouTube video of an on-line lecture by Khan University Medical (
Ovingite
in
MPN Voice
7 years ago
Ruxolitinib and nausea
Hi, I've been on Ruxolitinib for 11 days, for the first 9 days felt great, better than for ages, then yesterday morning was sick several times and had nausea all day, nausea again today and don't feel well. I'm so disappointed to have lost my feeling well! Has anyone else had nausea and sickness on
Hi, I've been on Ruxolitinib for 11 days, for the first 9 days felt great, better than for ages, then yesterday morning was sick several times and had nausea all day, nausea again today and don't feel well. I'm so disappointed to have lost my feeling well! Has anyone else had nausea and sickness on
francesb
in
MPN Voice
7 years ago
NICE publish guidance to enable NHS England commissioning of Venetoclax for treating CLL; within CDF managed access agreement.
Today The National Institute for Health and Care Excellence (NICE) have published technology appraisal guidance [TA487] https://www.nice.org.uk/guidance/ta487 No surprises this is in line with the final Appraisal Determination (FAD) last Month and our outline article here ( NICE use the Cancer Drugs
Today The National Institute for Health and Care Excellence (NICE) have published technology appraisal guidance [TA487] https://www.nice.org.uk/guidance/ta487 No surprises this is in line with the final Appraisal Determination (FAD) last Month and our outline article here ( NICE use the Cancer Drugs
HAIRBEAR_UK
in
Leukaemia Support
7 years ago
Road to a BMT... oops just got there
Hello Health Unlocked community, Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it. Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax
Hello Health Unlocked community, Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it. Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax
NMMP
in
CLL Support
7 years ago
Phlebotomy or Hydroxyurea
I have PV Jak2 positive. My blood counts have been very stable since 2012 so I have not been on any medications or other treatments. In July my counts elevated some. Hematologist had me return in three months to be checked again. They went up a bit more. Had blood work again yesterday. Platelets
I have PV Jak2 positive. My blood counts have been very stable since 2012 so I have not been on any medications or other treatments. In July my counts elevated some. Hematologist had me return in three months to be checked again. They went up a bit more. Had blood work again yesterday. Platelets
Sklines
in
MPN Voice
7 years ago
Chemo Might Be Next
I had check up with oncologist this week. Last January she told me that chemo would be sooner than later. I was able to avoid it all year. I have had CLL for 10 years. My WBC reached 193k. Last January I was at 150. Seems to be accelerating over the past 2 years. I have some swollen nodes. No other
I had check up with oncologist this week. Last January she told me that chemo would be sooner than later. I was able to avoid it all year. I have had CLL for 10 years. My WBC reached 193k. Last January I was at 150. Seems to be accelerating over the past 2 years. I have some swollen nodes. No other
GMa27
in
CLL Support
7 years ago
Mantel Cell Lymphomia
My partner was diagnosed with MCL three years ago. He underwent chemo and then had stem cell transplant. Recently, a blood test has indicated that his white blood cells have risen and that his platelets are now getting low. My partner looks and feels great, without showing any of the symptoms he first
My partner was diagnosed with MCL three years ago. He underwent chemo and then had stem cell transplant. Recently, a blood test has indicated that his white blood cells have risen and that his platelets are now getting low. My partner looks and feels great, without showing any of the symptoms he first
pollyg2016
in
CLL Support
7 years ago
Myleofibrosis and acute myeloid leukaemia
I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a
I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a
Paul278mc
in
MPN Voice
7 years ago
Ruxolitinib and weight gain
Hi, I'm just about to start Ruxolitinib and see that weight gain can be a side effect, some people reporting 2 stone or more. I know it sounds vain but I really want to avoid this if I can. Does anyone know, is it inevitable because of some chemical reaction or is it due to increased appetite resulting
Hi, I'm just about to start Ruxolitinib and see that weight gain can be a side effect, some people reporting 2 stone or more. I know it sounds vain but I really want to avoid this if I can. Does anyone know, is it inevitable because of some chemical reaction or is it due to increased appetite resulting
francesb
in
MPN Voice
7 years ago
NICE publish guidance to enable NHS England commissioning of Venetoclax for treating CLL; within CDF managed access agreement.
Today The National Institute for Health and Care Excellence (NICE) have published technology appraisal guidance [TA487] https://www.nice.org.uk/guidance/ta487 No surprises this is in line with the final Appraisal Determination (FAD) last Month and outline article here ( NICE use the Cancer Drugs Fund
Today The National Institute for Health and Care Excellence (NICE) have published technology appraisal guidance [TA487] https://www.nice.org.uk/guidance/ta487 No surprises this is in line with the final Appraisal Determination (FAD) last Month and outline article here ( NICE use the Cancer Drugs Fund
HAIRBEAR_UK
Administrator
in
CLL Support
7 years ago
Acute Lymphoblastic Leukemia
Is there a site like this for people diagnosed with ALL? A friend of a friend in her late 20's was just diagnosed a couple of weeks ago. I was hoping to connect her to an encouraging place like this! Thank you Farrpottery
Is there a site like this for people diagnosed with ALL? A friend of a friend in her late 20's was just diagnosed a couple of weeks ago. I was hoping to connect her to an encouraging place like this! Thank you Farrpottery
Farrpottery
in
CLL Support
7 years ago
A not-so-dumb question about IGHV clonal evolution
As part of a discussion a week ago titled "Warning this may be a dumb question" ( https://healthunlocked.com/cllsupport/posts/private/136589626/warning-this-may-be-a-dumb-question ) DMary wrote the following: "A helpful private message told me that IgVH mutation doesn't change and suggested I look at
As part of a discussion a week ago titled "Warning this may be a dumb question" ( https://healthunlocked.com/cllsupport/posts/private/136589626/warning-this-may-be-a-dumb-question ) DMary wrote the following: "A helpful private message told me that IgVH mutation doesn't change and suggested I look at
gardening-girl
in
CLL Support
7 years ago
Just Want to Cry!
On Saturday I went to collect my meds from the pharmacy. It's not too far to walk so I took my dog. We walked in a different direction which was exciting because there were more sniffs and lamp posts to wee on (him, not me 😂) and it was breezy, which caused much cavorting ( him, not me 😂) On the way
On Saturday I went to collect my meds from the pharmacy. It's not too far to walk so I took my dog. We walked in a different direction which was exciting because there were more sniffs and lamp posts to wee on (him, not me 😂) and it was breezy, which caused much cavorting ( him, not me 😂) On the way
Lupiknits
in
LUPUS UK
7 years ago
Year after CLL diagnosis~
After a yr of this CLL diagnosis I am still frustrated with the "wait and see" approach. I understand for older patients waiting but I am 54 and have been an active horseback rider my whole life. Now I have fatigue, muscle and joint pain, which the drs say is not specifically related to CLL. My lumph
After a yr of this CLL diagnosis I am still frustrated with the "wait and see" approach. I understand for older patients waiting but I am 54 and have been an active horseback rider my whole life. Now I have fatigue, muscle and joint pain, which the drs say is not specifically related to CLL. My lumph
Nettiehudson
in
CLL Support
7 years ago
Research survey on CLL/SLL
Hi We are doing some research in follow up to our abstract from ASH 2016 and would appreciate your help. Participate in an important Survey for Patients with CLL/SLL • Have you been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma? • Do you reside in the United States? If the
Hi We are doing some research in follow up to our abstract from ASH 2016 and would appreciate your help. Participate in an important Survey for Patients with CLL/SLL • Have you been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma? • Do you reside in the United States? If the
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
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