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Please Join Us! Tuesday August 8th, Gathering HOPE Community Social
Hello! For those of you who know me and to those of you I may not have spoken with or met yet, I am Michele Zeh, Manager of the Lung Cancer Living Room Series and I am excited to invite you to our monthly Gathering HOPE Social hosted on our ZOOM link. Tuesday, August 8th, at 5pm PT/8pm ET. At this
Hello! For those of you who know me and to those of you I may not have spoken with or met yet, I am Michele Zeh, Manager of the Lung Cancer Living Room Series and I am excited to invite you to our monthly Gathering HOPE Social hosted on our ZOOM link. Tuesday, August 8th, at 5pm PT/8pm ET. At this
Michelezeh
Partner
in
Lung Cancer Support
11 months ago
hot flushes
I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
Freshairfiend
in
PMRGCAuk
6 months ago
HSCT early in MS
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
BettysMom
in
My MSAA Community
4 months ago
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Stem Cell transplant register search goes on…
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
LFCLove
in
MPN Voice
4 months ago
Glad to see more and more players are jumping into the stem cell therapy
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
Farooqji
in
Cure Parkinson's
4 months ago
Stem cell transplant
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
A7x1823eb
in
AMN EASIER
4 months ago
SUPPORT GROUPS!
We are starting our next round of online support groups this week! If any of the groups sound like they would suit you then please get in touch. All the groups are held over Zoom, last for one hour and are hosted by a trained facilitator. The groups are a great way to give and recieve support whilst
We are starting our next round of online support groups this week! If any of the groups sound like they would suit you then please get in touch. All the groups are held over Zoom, last for one hour and are hosted by a trained facilitator. The groups are a great way to give and recieve support whilst
ConnectRoyCastle
Administrator
in
The Roy Castle Lung Cancer Foundation
11 months ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
PhysAssist
in
MPN Voice
4 months ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
4 months ago
Charity request for help: GCA patients in England
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Fran_Benson
Partner
in
PMRGCAuk
6 months ago
biochemical recurrence after RP. +post leukemia
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
junkwerc
in
Prostate Cancer Network
4 months ago
High BLood Pressure, Kidney failure, cause discovered
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
phebamom
in
High Blood Pressure Support
5 months ago
How often to Self Inject
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
MrJustatip
in
Pernicious Anaemia Society
9 months ago
Good sats - so why so breathless?
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
Timberman
in
Lung Conditions Community Forum
5 months ago
Tagrisso vs Erlotinib
Hi All, Dad had results of liquid biopsy and EGFR positive, Oncologist has recommended Erlotinib ( NHS treatment). We understand that his diagnosis T4 N2 M0 is non curative but trying to balance quality of life and length; chemo and a standard biopsy were deemed not tolerable for my 89 yr old dad. Silly
Hi All, Dad had results of liquid biopsy and EGFR positive, Oncologist has recommended Erlotinib ( NHS treatment). We understand that his diagnosis T4 N2 M0 is non curative but trying to balance quality of life and length; chemo and a standard biopsy were deemed not tolerable for my 89 yr old dad. Silly
Adaughter
in
The Roy Castle Lung Cancer Foundation
1 year ago
Tocilizumab
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
Noni71
in
PMRGCAuk
7 months ago
One year stem cell transplant anniversary
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
Scaredy_cat
in
MPN Voice
5 months ago
Happy Monday 😊
Good morning all, well after finally getting an appointment with the Chest clinic at the hospital, after my phoned appointment was cancelled four times. I got to see a specialist. I have had COPD for years now, taken lots of different inhalers. The specialist told me I have severe COPD, and told Trimbow
Good morning all, well after finally getting an appointment with the Chest clinic at the hospital, after my phoned appointment was cancelled four times. I got to see a specialist. I have had COPD for years now, taken lots of different inhalers. The specialist told me I have severe COPD, and told Trimbow
purdeyspringer
in
Lung Conditions Community Forum
1 year ago
Should I switch SSRIs?
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Griffo_
in
Thyroid UK
11 months ago
saving my dad
Hi all! My dad was recently diagnosed with Pulmonary Fibrosis. He is only 64 years old and last year this same time he was in great health! Drs are unsure if it’s IPF or another severe form of pulmonary fibrosis. He had a lung biopsy that came back inconclusive. He relies on full time oxygen and coughs
Hi all! My dad was recently diagnosed with Pulmonary Fibrosis. He is only 64 years old and last year this same time he was in great health! Drs are unsure if it’s IPF or another severe form of pulmonary fibrosis. He had a lung biopsy that came back inconclusive. He relies on full time oxygen and coughs
Timslungs
in
Lung Conditions Community Forum
1 year ago
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