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Update
biopsy and the outcome of this was l have MDS which the MDT think has been caused by the amount of chemo l have had over the past 10 years for which l am very grateful Unfortunately they are unable to give me anymore chemo as this with excaberat the MDS and l could be looking at things turning into
leukaemia
biopsy and the outcome of this was l have MDS which the MDT think has been caused by the amount of chemo l have had over the past 10 years for which l am very grateful Unfortunately they are unable to give me anymore chemo as this with excaberat the MDS and l could be looking at things turning into
leukaemia
Lewisriley47
in
My Ovacome
11 months ago
Switching Drs
In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. š¢ I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed
In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. š¢ I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed
K-itty
in
MPN Voice
1 year ago
UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today
This has been addressed by committee because ibrutinib plus venetoclax has been recommended for everyone with untreated chronic lymphocytic
leukaemia
.[/i] Please ask your doctor if this is suitable for you if you are approaching treatment for the first time. Jackie
This has been addressed by committee because ibrutinib plus venetoclax has been recommended for everyone with untreated chronic lymphocytic
leukaemia
.[/i] Please ask your doctor if this is suitable for you if you are approaching treatment for the first time. Jackie
Jm954
Administrator
in
CLL Support
1 year ago
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Supportive wife
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Cb1391
in
CLL Support
10 months ago
A new kid on the block? Nemtabrutinib
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLersāNemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to āFirst in human trial of new drug raises hopes for patients with relapsed blood cancerā dated 11/06/
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLersāNemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to āFirst in human trial of new drug raises hopes for patients with relapsed blood cancerā dated 11/06/
Varney
in
CLL Support
10 months ago
Fatigue issues taking Eltroxin combined with Hydroxy for ET
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Norma1831
in
MPN Voice
1 year ago
nutritional support/supplements for CLL
Hi we have just had recent diagnosis of CLL Any dietary or supplements tips? Have heard Green tea is helpful?
Hi we have just had recent diagnosis of CLL Any dietary or supplements tips? Have heard Green tea is helpful?
kingfishermountain
in
CLL Support
10 months ago
vaccines
hi everyone!! Iāve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as itās not understood why Iām so poorly so no treatment yet until those biopsy results incase thereās more going on. I wanted to ask if anyone else isnāt comfortable or even refuses vaccines
hi everyone!! Iāve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as itās not understood why Iām so poorly so no treatment yet until those biopsy results incase thereās more going on. I wanted to ask if anyone else isnāt comfortable or even refuses vaccines
Dragonfly766
in
CLL Support
10 months ago
HCT Jumped 3%.
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
russkatt
in
MPN Voice
1 year ago
Update re ASCT relapse
Due to my cll returning and having had several new lines of treatment my consultants both my Cll specialist and my transplant specialist have offered me Rchop chemotherapy as one of my few options. This treatment I believe is not used to treat cll but used to treat lymphomas. Apparently it has been
Due to my cll returning and having had several new lines of treatment my consultants both my Cll specialist and my transplant specialist have offered me Rchop chemotherapy as one of my few options. This treatment I believe is not used to treat cll but used to treat lymphomas. Apparently it has been
Kraskie1915
in
CLL Support
10 months ago
NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from
Leukaemia
Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from
Leukaemia
Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
Mazcd
MPNVoice
in
MPN Voice
10 months ago
B CELL lymphoma
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol Iām totally confused.. nothing new there! I did call the Doc to see what he thinks havenāt heard anything yet. Thought I would ask to see if you
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol Iām totally confused.. nothing new there! I did call the Doc to see what he thinks havenāt heard anything yet. Thought I would ask to see if you
Tchapman
in
CLL Support
10 months ago
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I canāt find them now!
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I canāt find them now!
Yanico
in
MPN Voice
1 year ago
New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
Manouche
in
MPN Voice
1 year ago
Petechia
I have been treated with Ibrutinib for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this. This is my first time to post and
I have been treated with Ibrutinib for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this. This is my first time to post and
Glasstop
in
CLL Support
10 months ago
CLL/SLL and ischemic bowel death
My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which
My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which
prichman
in
CLL Support
10 months ago
Have I progressed to PV?
Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood work ordered by my GP and the results showed an almost 200 thousand increase in platelets since May from 629 to 805. I messaged my MPN specialist
Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood work ordered by my GP and the results showed an almost 200 thousand increase in platelets since May from 629 to 805. I messaged my MPN specialist
mbr8076
in
MPN Voice
1 year ago
Treatment for life?
Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans
Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans
Quiltingone
in
CLL Support
10 months ago
High Risk?
Iāve actually been feeling really well recently so the thought of
leukaemia
is quite a blow.
Iāve actually been feeling really well recently so the thought of
leukaemia
is quite a blow.
lizzziep
in
MPN Voice
1 year ago
Pain in the spleen/splenomegaly
Hello, maybe someone has an idea. After 5 years w&w my spleen has now enlarged (splenomegaly). I've also been having pain on my left side for a few days now. Are there any natural or herbal ways I can support my spleen? Because I don't want to have a spleen removed. I don't take any other medicine,
Hello, maybe someone has an idea. After 5 years w&w my spleen has now enlarged (splenomegaly). I've also been having pain on my left side for a few days now. Are there any natural or herbal ways I can support my spleen? Because I don't want to have a spleen removed. I don't take any other medicine,
Omaschnabel
in
CLL Support
11 months ago
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