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CLL and Hyperthroid
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
Hidden
in
CLL Support
11 months ago
Imetelstat Users?
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
TimGS
in
MPN Voice
5 months ago
cancer in blood 6 months after STC
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
PiperAlfie
in
CLL Support
5 months ago
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Anyone near Dorking in Surrey who’d like to meet up?
Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story
Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story
Gipsy123
in
MPN Voice
5 months ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed. In the TRANSFORM-1 trial, the combination of the BCL-XL/BCL-2 inhibitor navitoclax
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed. In the TRANSFORM-1 trial, the combination of the BCL-XL/BCL-2 inhibitor navitoclax
PhysAssist
in
MPN Voice
6 months ago
besremi or jakafi
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
Laluna5683
in
MPN Voice
6 months ago
Post PV Myelofibrosis - One Year Update
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
marlenablue
in
MPN Voice
6 months ago
Rate of Decrease in RBC Count
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
hsdale3
in
MPN Voice
6 months ago
Bone Pain
I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in my lower center ribs and along the edges of the bottom of my ribs but hurting worse on each of my sides and center bottom of my ribs. has anyone
I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in my lower center ribs and along the edges of the bottom of my ribs but hurting worse on each of my sides and center bottom of my ribs. has anyone
Willowbug
in
CLL Support
11 months ago
Moving toward disease modification in polycythemia vera
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
Manouche
in
MPN Voice
6 months ago
Modbury123
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Modbury123
in
MPN Voice
6 months ago
Subsequent to previous posts
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
JHutton1994
in
Lung Conditions Community Forum
6 months ago
sudden purple mark over eye
hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years ago, so no diagnosis and hematologists so far have not felt there’s an Mpn or other issue. Today, of the blue a purplish mark about 3/4 in by
hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years ago, so no diagnosis and hematologists so far have not felt there’s an Mpn or other issue. Today, of the blue a purplish mark about 3/4 in by
Labbymom
in
MPN Voice
6 months ago
Ruxolitinib and skin cancers
Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision
Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision
Gipsy123
in
MPN Voice
6 months ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
1 year ago
mood and cll
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Gardengirl44
in
CLL Support
1 year ago
Infections with Ruxolitinib
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Orangeboykitty
in
MPN Voice
6 months ago
life insurance whilst waiting for official diagnosis
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
Newbie16
in
MPN Voice
7 months ago
Travel Insurance
This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed
This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed
NannaFlo
in
MPN Voice
7 months ago
Ruxolitinib & raised cholesterol
I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor. The sheet does say this is
I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor. The sheet does say this is
Cazbolac
in
MPN Voice
7 months ago
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