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Epipen - Serious Nut Allergy
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
Joseph260268
in
Lung Conditions Community Forum
11 months ago
Research Evaluating Risk of Richter Syndrome
Abstract is as follows: "Complex karyotype (CK) at chronic
lymphocytic
leukemia
(CLL) diagnosis is a negative biomarker of adverse outcome.
Abstract is as follows: "Complex karyotype (CK) at chronic
lymphocytic
leukemia
(CLL) diagnosis is a negative biomarker of adverse outcome.
jonathan7176
in
CLL Support
1 year ago
Ruxolitinib
Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around as I have no symptoms. I was diagnosed end of 2018 but had it al least since 2015. I am considering taking a part in clinical trial for Ruxo and
Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around as I have no symptoms. I was diagnosed end of 2018 but had it al least since 2015. I am considering taking a part in clinical trial for Ruxo and
Ameliav
in
MPN Voice
1 year ago
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flow cytometry is showing about 74% CLL involvement.
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
juniper1975
in
CLL Support
9 months ago
CLL and mRNA Vaccines
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
BWHR
in
CLL Support
9 months ago
Ruxalitinib and Peg interferon
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
waddles22
in
MPN Voice
1 year ago
p17 deletion. Can anyone advise or cheer me up?!
Hi! I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic leukaemia (CLL) and suspected Chronic myelomonocytic leukaemia (CMML), I have been still at early stage and not needing treatment. However, yesterday I received a copy of my consultant’s latest report with new blood
Hi! I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic leukaemia (CLL) and suspected Chronic myelomonocytic leukaemia (CMML), I have been still at early stage and not needing treatment. However, yesterday I received a copy of my consultant’s latest report with new blood
Fogey
in
CLL Support
9 months ago
Besremi, Pegasys and Jakafi adverse event question?
As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my anxious, I guess, my brother sent me a slide seems from Pharmaessential (the mfg of Besremi), as above. The title of the slide is "Besremi is far
As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my anxious, I guess, my brother sent me a slide seems from Pharmaessential (the mfg of Besremi), as above. The title of the slide is "Besremi is far
Joey1025
in
MPN Voice
1 year ago
Update.
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Jacksc06
in
CLL Support
10 months ago
Lymphatic drainage massages
After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the lymph nodes as much as possible. It seems intuitive exercise and hydration would be good for this potentially but should have no real negative
After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the lymph nodes as much as possible. It seems intuitive exercise and hydration would be good for this potentially but should have no real negative
Rando21
in
CLL Support
10 months ago
A ‘wobble’ caused by subset 6 CLL.
Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’ CLL in 2021 and continue to be on W & W. I have many of the classic symptoms but not severe enough to warrant treatment - yet! I’ve recently been
Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’ CLL in 2021 and continue to be on W & W. I have many of the classic symptoms but not severe enough to warrant treatment - yet! I’ve recently been
Petroc
in
CLL Support
10 months ago
Patient Power CLL & Fatigue 2022-10-19.
Fatigue is a side effect shared by just about every patient with chronic
lymphocytic
leukemia
(CLL).
Fatigue is a side effect shared by just about every patient with chronic
lymphocytic
leukemia
(CLL).
lankisterguy
Volunteer
in
CLL Support
2 years ago
Some results, at last
I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect! My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after
I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect! My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after
lizzziep
in
MPN Voice
1 year ago
White Paper recommends steps to improve the care and support of people with Chronic Lymphocytic Leukemia who face immune challenges
[/i] As well as reading the full report, you may also wish to visit or revisit our
pinned post about vaccinations for those with CLL
: [i]https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll [/i]and our p
inned post about immunity
[/i] As well as reading the full report, you may also wish to visit or revisit our
pinned post about vaccinations for those with CLL
: [i]https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll [/i]and our p
inned post about immunity
CLLerinOz
Administrator
in
CLL Support
1 year ago
Benzene
Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma. My MPN doc says no - the amount would not have been enough
Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma. My MPN doc says no - the amount would not have been enough
ERei
in
MPN Voice
1 year ago
Annoyed and Need to Vent
I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2 test is not detected & EPO is normal. He suggested that I do not have a MPN, phew what a relief right? Nope. Told me I should give blood every
I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2 test is not detected & EPO is normal. He suggested that I do not have a MPN, phew what a relief right? Nope. Told me I should give blood every
Lappool
in
MPN Voice
1 year ago
Story from The Guardian about gas stoves and links to lymphomas and leukaemias.
https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study
https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study
MAP44
in
MPN Voice
1 year ago
Myelofibrosis and bone pain
how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into
how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into
kiwitraveller
in
MPN Voice
1 year ago
eyesight problems
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
Grendall
in
MPN Voice
1 year ago
Hydroxyurea to give
Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment who live in Indonesia, simple because cost of air cargo. Cheers
Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment who live in Indonesia, simple because cost of air cargo. Cheers
william-Indo
in
MPN Voice
1 year ago
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