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Awaiting FISH results & bone marrow biopsy
Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections roughly every 6-8 weeks since then... have been neutropenic on some of these occasions.. haemoglobin and platelet counts low but stable... wbc
Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections roughly every 6-8 weeks since then... have been neutropenic on some of these occasions.. haemoglobin and platelet counts low but stable... wbc
AR0613
in
CLL Support
5 years ago
I have TP53
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
Doremefasol
in
CLL Support
5 years ago
Nana
I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal at the Duke Cancer Center. The day I walked into his office the Grimm reaper was riding on my back. This wonderful man looked at me and said
I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal at the Duke Cancer Center. The day I walked into his office the Grimm reaper was riding on my back. This wonderful man looked at me and said
Hidden
in
CLL Support
5 years ago
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CLL night sweats
Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?
Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?
truff4507
in
CLL Support
5 years ago
Good News
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
dandelup
in
CLL Support
5 years ago
Lab Visit
Hi all, For those of you who remember me say I was going to visit the Lab! I went this week - what a fantastic encouraging view I had on the research being done in the Southampton Research Department , work and research results which are shared backwards and forwards between Bournemouth, Canada, America
Hi all, For those of you who remember me say I was going to visit the Lab! I went this week - what a fantastic encouraging view I had on the research being done in the Southampton Research Department , work and research results which are shared backwards and forwards between Bournemouth, Canada, America
retired46
in
CLL Support
5 years ago
AXSL MUTATION
Hi Folks, I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies... I joined you folk last year in March, after ET Diagnosis.. Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. After BMB which I'm so glad I had it, at least
Hi Folks, I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies... I joined you folk last year in March, after ET Diagnosis.. Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. After BMB which I'm so glad I had it, at least
pontygirl
in
MPN Voice
5 years ago
Recent diagnosis
Last November I was diagnosed with T cell large granulocytic leukaemia which was a bit of a shock as I have no real symptoms, perhaps I'm a bit tired but who, at 68 yrs, isn't. Anyway I'm on watch and wait which is good. Has anyone else got this? How are you? Can you tell me about your experience
Last November I was diagnosed with T cell large granulocytic leukaemia which was a bit of a shock as I have no real symptoms, perhaps I'm a bit tired but who, at 68 yrs, isn't. Anyway I'm on watch and wait which is good. Has anyone else got this? How are you? Can you tell me about your experience
GrannyTWest
in
CLL Support
5 years ago
Update
Hi All, Thought it was about time I wrote with an update. Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so attempted a second transplant (HAPLO). Pleased to report that on Day 120 I am feeling good in myself and relatively healthy despite having
Hi All, Thought it was about time I wrote with an update. Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so attempted a second transplant (HAPLO). Pleased to report that on Day 120 I am feeling good in myself and relatively healthy despite having
Simon96
in
MPN Voice
5 years ago
Another possible MF ‘cure’ but very early stage....
https://www.apnews.com/Business%20Wire/569c6623ad784538ba40be42a99f087a “This clinical trial will evaluate the ability of AVID200 to achieve the disease-modifying outcomes of reversing bone marrow fibrosis and restoring normal hematopoiesis. Preclinical data demonstrate that selective neutralization
https://www.apnews.com/Business%20Wire/569c6623ad784538ba40be42a99f087a “This clinical trial will evaluate the ability of AVID200 to achieve the disease-modifying outcomes of reversing bone marrow fibrosis and restoring normal hematopoiesis. Preclinical data demonstrate that selective neutralization
Paul123456
in
MPN Voice
5 years ago
Haemo appointment
Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof
Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof
Graham7694
in
MPN Voice
5 years ago
Low RDW-CV
Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H 469000 MCV- H 103.0 MCH- H 34.3 MCHC- 33.2 RDW-CV- L 10.7 Neutrophils- 51.4 Lymphocytes- 39.7 Monocytes- 7.3 Eosinophils- L 1.6 Basophils- 0.0 I'm disturbed
Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H 469000 MCV- H 103.0 MCH- H 34.3 MCHC- 33.2 RDW-CV- L 10.7 Neutrophils- 51.4 Lymphocytes- 39.7 Monocytes- 7.3 Eosinophils- L 1.6 Basophils- 0.0 I'm disturbed
Yona
in
MPN Voice
5 years ago
What does a normal karyotype means in ET?
I have my BMB results and my heamatologist told me that i have normal karyotype, and no fibrosis. I have mild ET and she didnt mentioned anything about mutations. All this was short conversation from the telephone,just to let me know the results,cause she knew i was very stressed about it. I will meet
I have my BMB results and my heamatologist told me that i have normal karyotype, and no fibrosis. I have mild ET and she didnt mentioned anything about mutations. All this was short conversation from the telephone,just to let me know the results,cause she knew i was very stressed about it. I will meet
Aneliv9
in
MPN Voice
5 years ago
Update on Possible Richter Transformation
At the recommendation of one our members I called UPENN and asked to speak with a covering hematologist. I received a call fairly quickly, explained the situation and the physician was able to get into my patient portal, read the report and compare it to my 2011node biopsy. He does not think it’s Richters
At the recommendation of one our members I called UPENN and asked to speak with a covering hematologist. I received a call fairly quickly, explained the situation and the physician was able to get into my patient portal, read the report and compare it to my 2011node biopsy. He does not think it’s Richters
ReneeSusan
in
CLL Support
5 years ago
CLL and sugar
I have had CLL ten years. After eating more food with sugar than usual during holidays, night sweats were horrible. After completely cutting refined sugar from my diet, the sweats have stopped completely.
I have had CLL ten years. After eating more food with sugar than usual during holidays, night sweats were horrible. After completely cutting refined sugar from my diet, the sweats have stopped completely.
Lthgj
in
CLL Support
5 years ago
CLL Remission
I have been in remission for just over 5 years since finishing treatment in 2014 of FCR. Lately my lymphocytes and WBC are going up double in about 2-3 months so my Hemotologist had me do blood work for possible relapse . So now I wonder what the results will show . These test like molecular take long
I have been in remission for just over 5 years since finishing treatment in 2014 of FCR. Lately my lymphocytes and WBC are going up double in about 2-3 months so my Hemotologist had me do blood work for possible relapse . So now I wonder what the results will show . These test like molecular take long
Kmegood
in
CLL Support
5 years ago
Are you 11qATM CLL too ? what treatment works best? Please reply ASAP
My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen
My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen
LovecuresCLL
in
CLL Support
5 years ago
New test for mutations to calculate the profession of MF
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hidden
in
MPN Voice
5 years ago
IGVH Hypermutation test.
I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that I am not hyper mutated. It reads like this: "IGVH analysis by sequencing demonstrates a clonal but functionally unproductive rearrangement.
I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that I am not hyper mutated. It reads like this: "IGVH analysis by sequencing demonstrates a clonal but functionally unproductive rearrangement.
Camaroman
in
CLL Support
5 years ago
Nplate clots
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77
in
ITP Support Association
5 years ago
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