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Changing from hydroxy to Analgride
Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will be having another bone marrow check, & possibly blood transfusion shortly. Looks as though I,ll be going onto Analgride instead. Can I ask people
Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will be having another bone marrow check, & possibly blood transfusion shortly. Looks as though I,ll be going onto Analgride instead. Can I ask people
Didgeridoo2
in
MPN Voice
10 months ago
Richter's Transformation: standardized therapy or clinical trial
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
janeychen5712
in
CLL Support
8 months ago
update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
8 months ago
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CLL leukemia
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
Bobby13
in
CLL Support
8 months ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
cujoe
in
CLL Support
8 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. 😢 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. 😢 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
11 months ago
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
10 months ago
CLL and now very elevated Monocytes
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
ralphfelo
in
CLL Support
8 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
11 months ago
Zanubrutinib or O&V
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
Cb1391
in
CLL Support
8 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
11 months ago
SCT while feeling well
I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting
leukaemia
. I have pretty much decided I will go through with it, but know it will be very tough.
I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting
leukaemia
. I have pretty much decided I will go through with it, but know it will be very tough.
SRH55
in
MPN Voice
1 year ago
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
8 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 CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Varney
in
CLL Support
8 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 can’t 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 can’t find them now!
Yanico
in
MPN Voice
11 months 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
9 months 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
11 months ago
vaccines
hi everyone!! I’ve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as it’s not understood why I’m so poorly so no treatment yet until those biopsy results incase there’s more going on. I wanted to ask if anyone else isn’t comfortable or even refuses vaccines
hi everyone!! I’ve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as it’s not understood why I’m so poorly so no treatment yet until those biopsy results incase there’s more going on. I wanted to ask if anyone else isn’t comfortable or even refuses vaccines
Dragonfly766
in
CLL Support
9 months ago
Periorbital necrotizing sweet syndrome
Periorbital necrotizing sweet syndrome: A report of two cases mimicking necrotizing soft tissue infections, Mar 2024. https://pubmed.ncbi.nlm.nih.gov/38487334/ 2 patients with necrotizing Sweet's syndrome - a 74-year-old female with myelodysplastic syndrome, and a 40-year-old female with acute myeloid
leukaemia
Periorbital necrotizing sweet syndrome: A report of two cases mimicking necrotizing soft tissue infections, Mar 2024. https://pubmed.ncbi.nlm.nih.gov/38487334/ 2 patients with necrotizing Sweet's syndrome - a 74-year-old female with myelodysplastic syndrome, and a 40-year-old female with acute myeloid
leukaemia
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
4 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
11 months ago
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