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Feeling desperate as platelets won’t rise
please please has anyone experienced this: on Niraparib my platelet count dropped and I had a transfusion in hospital. That was last Monday and i have had another transfusion since then . After the transfusions the count goes up well, then falls again and my count just won’t go up on its own but keeps
please please has anyone experienced this: on Niraparib my platelet count dropped and I had a transfusion in hospital. That was last Monday and i have had another transfusion since then . After the transfusions the count goes up well, then falls again and my count just won’t go up on its own but keeps
Bluetilly
in
My Ovacome
1 year ago
rux plus epo: any info as to effects on skin cancers?
Hi I have MF, and tho Ive been a member of this group for about 6 yrs haven’t posted for a while. I’m now being treated at the Marsden in Sutton ( BTW, anyone else seen there?) and as I had sarcomatoid sccs triggered by the rux (excised, radiotherapy) I’m reluctant to take any meds that might make
Hi I have MF, and tho Ive been a member of this group for about 6 yrs haven’t posted for a while. I’m now being treated at the Marsden in Sutton ( BTW, anyone else seen there?) and as I had sarcomatoid sccs triggered by the rux (excised, radiotherapy) I’m reluctant to take any meds that might make
Rachelthepotter
in
MPN Voice
1 year ago
My anxiety is stopping me from doing something that will help me. How do I power on through this?
I have chronically low iron, my Dr has prescribed a hormonal pill and an iron transfusion. Two things that terrify me for different reasons. I want to be able to go with the flow, but I can’t. I’ve asked about alternatives, this is my only option left. I’ve used my alternatives already. I am very much
I have chronically low iron, my Dr has prescribed a hormonal pill and an iron transfusion. Two things that terrify me for different reasons. I want to be able to go with the flow, but I can’t. I’ve asked about alternatives, this is my only option left. I’ve used my alternatives already. I am very much
Wild-Flowers
in
Anxiety and Depression Support
1 year ago
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Second Reaccurrence
I have been in the maintenance drug rucaparib since March 2022. After some dose reductions I settled down to it quite well apart from from blood transfusions due to low haemoglobin. However, at my last CT scan this June my lymph nodes had swollen suggesting the rucaparib was no longer working. I was
I have been in the maintenance drug rucaparib since March 2022. After some dose reductions I settled down to it quite well apart from from blood transfusions due to low haemoglobin. However, at my last CT scan this June my lymph nodes had swollen suggesting the rucaparib was no longer working. I was
BadgerBright
in
My Ovacome
1 year ago
Talzenna approved by FDA
FDA Approves Talzenna for Metastatic, Castration-Resistant Prostate Cancer Significant radiographic progression-free survival seen for homologous recombination repair gene mutation, including with BRCA mutation HealthDay MONDAY, June 26, 2023 (HealthDay News) -- The U.S. Food and Drug Administration
FDA Approves Talzenna for Metastatic, Castration-Resistant Prostate Cancer Significant radiographic progression-free survival seen for homologous recombination repair gene mutation, including with BRCA mutation HealthDay MONDAY, June 26, 2023 (HealthDay News) -- The U.S. Food and Drug Administration
Magnus1964
in
Prostate Cancer Network
1 year ago
Is there hope? I’m dreading asking the question of “how long”…
They wanted to start chemotherapy but weren’t able to start it until April due to low
platelet
and blood counts and him needing multiple
transfusions
. He’s only been able to get one dose of. chemo so far.
They wanted to start chemotherapy but weren’t able to start it until April due to low
platelet
and blood counts and him needing multiple
transfusions
. He’s only been able to get one dose of. chemo so far.
cookingwithdad58
in
Advanced Prostate Cancer
1 year ago
Endometriosis?
Hi everyone My journey is quite a lengthy one so I’ll attempt to shorten it by containing the most important info… when I was a teenager I had awfully painful, extremely heavy periods at times they would bring me to tears, this improved after having children but was still far from “normal” whatever
Hi everyone My journey is quite a lengthy one so I’ll attempt to shorten it by containing the most important info… when I was a teenager I had awfully painful, extremely heavy periods at times they would bring me to tears, this improved after having children but was still far from “normal” whatever
Channy3
in
Endometriosis UK
1 year ago
Hurdle
Finished 6 pluvicto in May. PSA started at 15 ended at 35. Bone scans at end say many Mets to bone. I particularly felt very winded towards end of pluvicto treatments. I was walking 3-5 miles until April then achiness in femur, and loss off breath. MO had me scheduled to start xofigo 3 weeks ago but
Finished 6 pluvicto in May. PSA started at 15 ended at 35. Bone scans at end say many Mets to bone. I particularly felt very winded towards end of pluvicto treatments. I was walking 3-5 miles until April then achiness in femur, and loss off breath. MO had me scheduled to start xofigo 3 weeks ago but
RunThru
in
Advanced Prostate Cancer
1 year ago
myelofibrosis and interferon
Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 2019. I progressed to Myelofibrosis in March 2021. I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22. I had very mild side effects which only lasted
Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 2019. I progressed to Myelofibrosis in March 2021. I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22. I had very mild side effects which only lasted
Pragmaticone
in
MPN Voice
1 year ago
How long can a human life live with unmanaged pain
Pretty morbid , i know , for my first post. I guess I never realized such a group existed, yet, i have a profile. Sometime ago im sure i created a profile but if you ask me today if I remember, my answer would be i must have if it says so. It was so easy to make light and be optimistic about how my
Pretty morbid , i know , for my first post. I guess I never realized such a group existed, yet, i have a profile. Sometime ago im sure i created a profile but if you ask me today if I remember, my answer would be i must have if it says so. It was so easy to make light and be optimistic about how my
Mommamoon
in
My MSAA Community
1 year ago
Water or how much water on Gazyva?
Skyshack and I got into a discussion about how much water are you to drink when on V+O. I decided to send out my general findings and see if anyone has additional info. I was [u]
unable
[/u] to find definitive instructions for water and Gazyva. An AI search on Microsoft first took me to drug
Skyshack and I got into a discussion about how much water are you to drink when on V+O. I decided to send out my general findings and see if anyone has additional info. I was [u]
unable
[/u] to find definitive instructions for water and Gazyva. An AI search on Microsoft first took me to drug
Rico49
in
CLL Support
1 year ago
What a start with V+O
Well I finally started my treatment and the first week was quite a roller coaster. Day 1 ,I was only 10 minutes into the treatment and I had a severe reaction. Blood pressure dropped to 70/30 , hot flashes, chills, nausea but 5 nurses did their thing and reversed it pretty quickly. Completed the dose
Well I finally started my treatment and the first week was quite a roller coaster. Day 1 ,I was only 10 minutes into the treatment and I had a severe reaction. Blood pressure dropped to 70/30 , hot flashes, chills, nausea but 5 nurses did their thing and reversed it pretty quickly. Completed the dose
Rico49
in
CLL Support
1 year ago
Deferasirax and Ibrutinib
Hi, my ferritin is 900, which is due to repeated blood transfusions , The oncologist has prescribed me Deferasirax 180 mg per day. On the other hand, my ibrutinib is 140 mg due to the take of voriconazole. Is it necessary to change the dose of ibrutinib to take Deferasirax?
Hi, my ferritin is 900, which is due to repeated blood transfusions , The oncologist has prescribed me Deferasirax 180 mg per day. On the other hand, my ibrutinib is 140 mg due to the take of voriconazole. Is it necessary to change the dose of ibrutinib to take Deferasirax?
ava1967ir
in
CLL Support
1 year ago
hypoxic, advice please completely overwhelmed.
to cut story short I have been reading and reading so much on here and need to ask for advice or suggestions. my father went in for a optional procedure to relieve nerve pressure in arm - spinal surgery. During this an accident occurred and an artery nicked where he bleed out and needed massive blood
to cut story short I have been reading and reading so much on here and need to ask for advice or suggestions. my father went in for a optional procedure to relieve nerve pressure in arm - spinal surgery. During this an accident occurred and an artery nicked where he bleed out and needed massive blood
Alwayshopefullove
in
Headway
1 year ago
hematocrit 23 - blood transfusion
My husband’s mylofrobisis has progressed to high risk . He was just put on jakafi at 10mg twice a day for about a month now He feels much better after changing from droxia to Jakafi and his appetite is good and not as anemic.. however we just came in from seeing his MPN doctor and his hemoglobin
My husband’s mylofrobisis has progressed to high risk . He was just put on jakafi at 10mg twice a day for about a month now He feels much better after changing from droxia to Jakafi and his appetite is good and not as anemic.. however we just came in from seeing his MPN doctor and his hemoglobin
Bainbridge
in
MPN Voice
1 year ago
I wish my future in laws would accept me..
To explain what I mean I have to give a bit of a backstory so you can understand why my future in laws feel this way. So I’m going to be honest about it when me & my fiancé started dating at first his family did really like me. They have said they felt that I was a good woman who’s independent single
To explain what I mean I have to give a bit of a backstory so you can understand why my future in laws feel this way. So I’m going to be honest about it when me & my fiancé started dating at first his family did really like me. They have said they felt that I was a good woman who’s independent single
Screambaby
in
Anxiety and Depression Support
1 year ago
ARRRGH !
Hi all, I live in Tasmania, Australia and do not have private health cover. I am 60 years old and have had rls since I was 21, that I know of. I have also been on antidepressants since 1980... I realky believe that they have caused the rls as no one in my family had it. Anyway, it became absolutely
Hi all, I live in Tasmania, Australia and do not have private health cover. I am 60 years old and have had rls since I was 21, that I know of. I have also been on antidepressants since 1980... I realky believe that they have caused the rls as no one in my family had it. Anyway, it became absolutely
Oscarcat63
in
Restless Legs Syndrome
1 year ago
My beloved father and best friend has passed away, he will always be my hero.
My wonderful father Albert Moser passed away May 20, 2023. The last few months have been incredibly hard. After his 4th dose of chemo in February, he had a big bleed from a tumor in his bladder which almost killed him. After a 10 day hospital stay with 12 transfusions and nephrostomy tubes inserted he
My wonderful father Albert Moser passed away May 20, 2023. The last few months have been incredibly hard. After his 4th dose of chemo in February, he had a big bleed from a tumor in his bladder which almost killed him. After a 10 day hospital stay with 12 transfusions and nephrostomy tubes inserted he
fmoser
in
Advanced Prostate Cancer
1 year ago
Any experiences with D negative blood type?
I’ve recently got my blood results back from first midwife apt (I’m 10 weeks +2 now) and have received a letter saying I need extra tests and that I might need a transfusion/ injection if my baby is D positive as my blood will be attacking my baby’s red blood cells! Of course that’s not a nice thought
I’ve recently got my blood results back from first midwife apt (I’m 10 weeks +2 now) and have received a letter saying I need extra tests and that I might need a transfusion/ injection if my baby is D positive as my blood will be attacking my baby’s red blood cells! Of course that’s not a nice thought
Mlove12
in
Pregnancy and Parenting Support
1 year ago
new results after iron transfusion-help pls
Hi I’ve had an iron transfusion and retested. My ferritin has gone from rock bottom to beautiful. I’d like help with the rest of the results. I’m taking levo AM 150mcg. The usual protocols were followed for testing. I no longer take T3. Thank you
Hi I’ve had an iron transfusion and retested. My ferritin has gone from rock bottom to beautiful. I’d like help with the rest of the results. I’m taking levo AM 150mcg. The usual protocols were followed for testing. I no longer take T3. Thank you
Emuflea
in
Thyroid UK
1 year ago
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