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I would like to hear from people needing regular blood transfusions
Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia
Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia
Jotame
in
CLL Support
5 years ago
Not what it turned out to be
Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with
Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with
mdcupp6201
in
MPN Voice
5 years ago
Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
Jotame
in
CLL Support
5 years ago
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Polycythemia Vera with myelofibrosis
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
IK5555
in
MPN Voice
5 years ago
Use of MRD Status Following Obinutuzumab/Ibrutinib to Guide Subsequent Intensification of Therapy in CLL
More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-obinutuzumab-ibrutinib-mrd-status-guide-treatment/ Jackie
More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-obinutuzumab-ibrutinib-mrd-status-guide-treatment/ Jackie
Jm954
Administrator
in
CLL Support
5 years ago
CLL Specialist
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
Hidden
in
CLL Support
5 years ago
Are they faking this serious illness?
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
Justwantanswers
in
Leukaemia CARE
5 years ago
CLL Transformation - Richter's?
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
SarasotaPaul
in
CLL Support
5 years ago
iWCLL Guidelines for the diagnosis, management and treatment of CLL - a brief history and the changes in last year's long awaited update
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
AussieNeil
Partner
in
CLL Support
5 years ago
Accelerated Dental Decay
Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a direct effect of the chemo; a side effect or the result of a compromised immune system?
Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a direct effect of the chemo; a side effect or the result of a compromised immune system?
MaitreD
in
CLL Support
5 years ago
New meds for Myelofibrosis
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Cja1956
in
MPN Voice
5 years ago
Now PCV go's Beyond limit
Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9 months i will have phlebotomy Anyone has secondary polycythemia and do phlebotomy after so long period??
Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9 months i will have phlebotomy Anyone has secondary polycythemia and do phlebotomy after so long period??
Vigiindia
in
MPN Voice
5 years ago
Why did I get CLL? Clearing up confusion between correlation and causation
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
AussieNeil
Partner
in
CLL Support
5 years ago
My exposure to Ethylene Oxide.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
Bogi1
in
CLL Support
5 years ago
A Tool to Select Candidates for Allogeneic Hematopoietic Cell Transplant in CLL but do we need it?
[/i] More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-tool-select-candidates-allogeneic-stem-cell-transplant/? Jackie
[/i] More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-tool-select-candidates-allogeneic-stem-cell-transplant/? Jackie
Jm954
Administrator
in
CLL Support
5 years ago
Dr Mary Ann Anderson on CLL, Venetoclax and future trends in CLL management
Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. [i]Dr Mary Ann Anderson is one of only a few researchers who has seen their work in the lab translate to a frontline therapy for blood cancer. [/i] [i]“Venetoclax targets a protein which
Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. [i]Dr Mary Ann Anderson is one of only a few researchers who has seen their work in the lab translate to a frontline therapy for blood cancer. [/i] [i]“Venetoclax targets a protein which
AussieNeil
Partner
in
CLL Support
5 years ago
PV
Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have
Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have
MamPRV
in
MPN Voice
5 years ago
Newly diagnosed too, stage 0
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
patilin
in
CLL Support
5 years ago
Richter Transformation possible?
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
writepa
in
CLL Support
5 years ago
Starting Treatment
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
12Caine12
in
CLL Support
5 years ago
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