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Can you manage the psychological impact of treatment relapse?
Audience:
Those affected by
acute
leukaemia
treatment relapse, CLL patients whose current treatment has stopped working, or whose disease has returned from previous treatments.
Audience:
Those affected by
acute
leukaemia
treatment relapse, CLL patients whose current treatment has stopped working, or whose disease has returned from previous treatments.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Evosheld
I joined the Evosheld UK Facebook page where there is a strong campaign for the government to authorise Evusheld. We were asked to write to our MPs and ask for the question to raised on the House of Commons. I have written several letters to my MP and generally get a stock reply. Here is the latest
I joined the Evosheld UK Facebook page where there is a strong campaign for the government to authorise Evusheld. We were asked to write to our MPs and ask for the question to raised on the House of Commons. I have written several letters to my MP and generally get a stock reply. Here is the latest
kitchengardener2
in
CLL Support
2 years ago
CLL highly correlated to other cancers?
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
NixRose
in
CLL Support
2 years ago
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Jak2 targeting for therapies
We've had posts on promising immune therapies for CALR. These take advantage of the fact that CALR is findable in the body. A related item is the resistance of Jak2 being discovered and thus a barrier to immune therapies for Jak2. Here is a very technical report I don't understand, but I believe
We've had posts on promising immune therapies for CALR. These take advantage of the fact that CALR is findable in the body. A related item is the resistance of Jak2 being discovered and thus a barrier to immune therapies for Jak2. Here is a very technical report I don't understand, but I believe
EPguy
in
MPN Voice
2 years ago
Relapse Worries? Help, Please!
Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay! Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these
Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay! Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these
DRM18
in
CLL Support
2 years ago
combo Jakafi and Pegasys
i am just stated the combo treatment of Jakafi 20mg twice perday + Pegasys 135mcg weekly for PV and it success to reduce my PLT from 1.2mi to 300k; HCT from 47 to 41,3; WBC from 27 to 16 and HGB from 18 to 14. does anyone with same treatment can share their experience with this combo...? thanks
i am just stated the combo treatment of Jakafi 20mg twice perday + Pegasys 135mcg weekly for PV and it success to reduce my PLT from 1.2mi to 300k; HCT from 47 to 41,3; WBC from 27 to 16 and HGB from 18 to 14. does anyone with same treatment can share their experience with this combo...? thanks
william-Indo
in
MPN Voice
2 years ago
stinging itch
I have been free of the stinging itch for nearly 4 years thanks to ruxolitinib but has all of a sudden returned and I wondered if the same has happened anyone else?
I have been free of the stinging itch for nearly 4 years thanks to ruxolitinib but has all of a sudden returned and I wondered if the same has happened anyone else?
S031251
in
MPN Voice
2 years ago
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
CLL & Mastectomy / Implants
I'm wondering if anyone here with CLL/SLL has undergone a breast reduction or mastectomy since diagnosis. If so, were you on treatment or WW at time of surgery? If you were on treatment, did you have to stop for surgery? How was your healing? If you had a mastectomy, did you get implants after
I'm wondering if anyone here with CLL/SLL has undergone a breast reduction or mastectomy since diagnosis. If so, were you on treatment or WW at time of surgery? If you were on treatment, did you have to stop for surgery? How was your healing? If you had a mastectomy, did you get implants after
Amberesque
in
CLL Support
2 years ago
Monoclonal antibodies vs. Paxlovid
I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was
I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was
AVD92449
in
CLL Support
2 years ago
New Diagnosis :what does all this blood work mean?
I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see: No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected A negative FISH for BCR-ABLI fusion. 2 weeks
I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see: No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected A negative FISH for BCR-ABLI fusion. 2 weeks
Adante
in
CLL Support
2 years ago
World CLL Day / Blood Cancer Awareness Month
CLL Support is marking Blood Cancer Awareness Month in September with an initiative that underpins our “You Can Live Well with CLL” message. This is not simply a convenient phrase that rhymes but seeks to demonstrate and empower our members to endeavour to make the best of their diagnosis, treatment
CLL Support is marking Blood Cancer Awareness Month in September with an initiative that underpins our “You Can Live Well with CLL” message. This is not simply a convenient phrase that rhymes but seeks to demonstrate and empower our members to endeavour to make the best of their diagnosis, treatment
Mild-Rover
in
CLL Support
2 years ago
Update
just got a call to say that my husband's JAK2 results are back. They wanted to discuss it with him over the phone but I pointed out he has major brain injuries as a result of brain haemorrhage and strokes and he won't cope on the phone. We have an appointment for Friday 5th August late morning.
just got a call to say that my husband's JAK2 results are back. They wanted to discuss it with him over the phone but I pointed out he has major brain injuries as a result of brain haemorrhage and strokes and he won't cope on the phone. We have an appointment for Friday 5th August late morning.
CelticCrow68
in
MPN Voice
2 years ago
E2T2 mutation
Hello everyone one Thank you for reading my second post, I am still trying to get my head around my new diagnosis I have just asked my haematologist dept, What have I been diagnosed with besides ET+JAK2 and they have told me they are going to do a bone marrow test to see if I have …. E2 T2 naturally
Hello everyone one Thank you for reading my second post, I am still trying to get my head around my new diagnosis I have just asked my haematologist dept, What have I been diagnosed with besides ET+JAK2 and they have told me they are going to do a bone marrow test to see if I have …. E2 T2 naturally
Tyray123
in
MPN Voice
2 years ago
Optical Genome Mapping: a promising new tool to assess genomic complexity - Part Two
Further to https://healthunlocked.com/cllsupport/posts/148409355/optical-genome-mapping-a-promising-new-tool-to-assess-genomic-complexity-in-cll [u]An update from watching the OGM webinar[/u] My impression is that AML cells' DNA has greater structural variation (mutation) than seen in CLL. Some of
Further to https://healthunlocked.com/cllsupport/posts/148409355/optical-genome-mapping-a-promising-new-tool-to-assess-genomic-complexity-in-cll [u]An update from watching the OGM webinar[/u] My impression is that AML cells' DNA has greater structural variation (mutation) than seen in CLL. Some of
bennevisplace
in
CLL Support
2 years ago
NAC (N-Acetylcysteine) at the FDA and vs oral glutathione
Some of us are taking NAC supplement for its antinflammatory effects. It's also subject of this phase 1-2 MPN trial looking for dose and MPN-TSS symptom improvements: https://clinicaltrials.gov/ct2/show/NCT05123365 In the US, FDA had been considering removing it from allowed supplements, but it seems
Some of us are taking NAC supplement for its antinflammatory effects. It's also subject of this phase 1-2 MPN trial looking for dose and MPN-TSS symptom improvements: https://clinicaltrials.gov/ct2/show/NCT05123365 In the US, FDA had been considering removing it from allowed supplements, but it seems
EPguy
in
MPN Voice
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
Your Role in Managing Your Care
Thriving with CLL: Your Role in Managing Your Care
Free Webinar Presented by the Patient Empowerment Network Tuesday, August 30th 1:00 pm - 1:30 pm ET - https://powerfulpatients.org/event/thriving-with-cll-your-role-in-managing-your-care/ - How can patients thrive with chronic lymphocytic
Thriving with CLL: Your Role in Managing Your Care
Free Webinar Presented by the Patient Empowerment Network Tuesday, August 30th 1:00 pm - 1:30 pm ET - https://powerfulpatients.org/event/thriving-with-cll-your-role-in-managing-your-care/ - How can patients thrive with chronic lymphocytic
lankisterguy
Volunteer
in
CLL Support
2 years ago
Restoration of the immune function as a complementary strategy to treat Chronic Lymphocytic Leukemia effectively
This publication is very interesting and describes the latest approaches to the treatment of CLL, relating them to the action of the immune system. There are a number of new insights into the mechanism of CLL such as: "CLL has undergone relevant clinical advances in the past decades, both in the understanding
This publication is very interesting and describes the latest approaches to the treatment of CLL, relating them to the action of the immune system. There are a number of new insights into the mechanism of CLL such as: "CLL has undergone relevant clinical advances in the past decades, both in the understanding
Yalokin
in
CLL Support
2 years ago
ALCALABRUTINIB FAILING
Why are clinical trials our only option for the most part, why does our treatments cause more mutations and a cancer that is harder to treat, at some point, our cancer will outpace our options, and we will have none. We must be very intelligent on our line of treatments and make sure each we choose wisely
Why are clinical trials our only option for the most part, why does our treatments cause more mutations and a cancer that is harder to treat, at some point, our cancer will outpace our options, and we will have none. We must be very intelligent on our line of treatments and make sure each we choose wisely
CAM729
in
CLL Support
2 years ago
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