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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
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
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
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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
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
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
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
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
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
rituxan treatment
My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this
My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this
Bluegillking
in
CLL Support
2 years ago
Optical genome mapping: a promising new tool to assess genomic complexity in CLL
In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new method of optical genome mapping (OGM) remains strictly experimental. Preliminary research, though, does suggest that OGM can enhance cytogenomic
In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new method of optical genome mapping (OGM) remains strictly experimental. Preliminary research, though, does suggest that OGM can enhance cytogenomic
bennevisplace
in
CLL Support
2 years ago
Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?
Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea) Multiple Myeloma (more specifically: Multiple Plasmacytoma) diagnosed 2018/2019. PRV remains in remission but MM relapsed some months ago.
Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea) Multiple Myeloma (more specifically: Multiple Plasmacytoma) diagnosed 2018/2019. PRV remains in remission but MM relapsed some months ago.
SolasChoir
in
MPN Voice
2 years ago
Covid Vax Long Term T-cell Immunity
I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired Immunity" occurs by vax or infection. A large portion of the world has acquired immunity and likely T-cell protection. We saw last Spring in Hong
I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired Immunity" occurs by vax or infection. A large portion of the world has acquired immunity and likely T-cell protection. We saw last Spring in Hong
EPguy
in
MPN Voice
2 years ago
How best to take Colestyramine (Cholestyramine) please?
Confusingly I was also on statins for very high cholesterol (thought to be a polygenic case, note I'm a treated
leukaemia
patient probably with lots of mixed up genes). I have stopped taking statins whilst I take Colestyramine.
Confusingly I was also on statins for very high cholesterol (thought to be a polygenic case, note I'm a treated
leukaemia
patient probably with lots of mixed up genes). I have stopped taking statins whilst I take Colestyramine.
Ernest2
in
IBS Network
2 years ago
Dr Mesa on MF prognostics, Rux and SCT
Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from the phase 1 study of ruxolitinib [i](this dates to early as 2007) [/i]at our centers that are still on the therapy. These are individuals that
Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from the phase 1 study of ruxolitinib [i](this dates to early as 2007) [/i]at our centers that are still on the therapy. These are individuals that
EPguy
in
MPN Voice
2 years ago
TSH going wrong way and no ft4 tested.
211- 911ng/L) 04/08/22 B12 978ng/L 211 - 911ng/L) was taking Igennus super B complex,which states on label that B12 contained is 36000% of NRV,so must take a while for levels to drop to within normal range,however, having googled raised b12 levels, I've discovered that it could be a sign of
leukaemia
211- 911ng/L) 04/08/22 B12 978ng/L 211 - 911ng/L) was taking Igennus super B complex,which states on label that B12 contained is 36000% of NRV,so must take a while for levels to drop to within normal range,however, having googled raised b12 levels, I've discovered that it could be a sign of
leukaemia
sobs1962
in
Thyroid UK
2 years ago
has anybody had blood test results with 35% elevated urea level?
has anybody had blood test results with 35% elevated urea level and the doctors said to ignore it. The Creatinine & EGFR that matters. thank you for sharing your thoughts. Kind regards.
has anybody had blood test results with 35% elevated urea level and the doctors said to ignore it. The Creatinine & EGFR that matters. thank you for sharing your thoughts. Kind regards.
catherine1712
in
LUPUS UK
2 years ago
PI3K inhibitors (idelalisib,copanlisib, duvelisib, parsaclisib, umbralisib, zandelisib, ACP-319) in CLL: where do we go from here?
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
CLLerinOz
Administrator
in
CLL Support
2 years ago
A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia
Hello The paper below recently came out in May. I thought member would be interested. Apologies if this is old news. “A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia” It is freely downloadable from PubMed at https://pubmed.ncbi.nlm.nih.gov
Hello The paper below recently came out in May. I thought member would be interested. Apologies if this is old news. “A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia” It is freely downloadable from PubMed at https://pubmed.ncbi.nlm.nih.gov
LongETinUS
in
MPN Voice
2 years ago
Can you manage the psychological impact of treatment relapse?
We will be Joined on the panel by:
Anne Crook, Counsellor / Psychotherapist, Psycho-oncology, The Christie NHS Foundation Trust Patient in treatment remission - TBC Patient with experience of chronic
leukaemia
treatment relapse - TBC Patient with experience of acute
leukaemia
treatment relapse
We will be Joined on the panel by:
Anne Crook, Counsellor / Psychotherapist, Psycho-oncology, The Christie NHS Foundation Trust Patient in treatment remission - TBC Patient with experience of chronic
leukaemia
treatment relapse - TBC Patient with experience of acute
leukaemia
treatment relapse
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
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