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Unmutated CLL and MRD-
Hi all - I was just posting this question on the CLL Group for Younger Aged People on Facebook, and I thought I would post it here as well. When you were diagnosed with CLL, were you mutated or unmutated? If you were unmutated and received treatment, did you achieve MRD-? If so, have you relapsed? How
Hi all - I was just posting this question on the CLL Group for Younger Aged People on Facebook, and I thought I would post it here as well. When you were diagnosed with CLL, were you mutated or unmutated? If you were unmutated and received treatment, did you achieve MRD-? If so, have you relapsed? How
dsspivak2018
in
CLL Support
7 years ago
Duvelisib Drug Succeeds in Late-Stage Trial
I subscribe to Newsmax Health, and this was just released. I've seen this 'in trial' drug mentioned recently for CLL, and this looks like a promising new drug option. The manufacturer is going to submit the drug next year for approval. Here is a paragraph from the writeup: "Verastem's drug, Duvelisib
I subscribe to Newsmax Health, and this was just released. I've seen this 'in trial' drug mentioned recently for CLL, and this looks like a promising new drug option. The manufacturer is going to submit the drug next year for approval. Here is a paragraph from the writeup: "Verastem's drug, Duvelisib
crystalsky
in
CLL Support
7 years ago
Spot Leukaemia campaign launches
Dear members, We're delighted to launch the #spotleukaemia campaign as part of blood cancer awareness month. We need more people to become aware of the signs and symptoms of leukaemia. Early diagnosis saves lives. Find out more about how you can get involved on our website - www.leukaemiacare.org.uk/
Dear members, We're delighted to launch the #spotleukaemia campaign as part of blood cancer awareness month. We need more people to become aware of the signs and symptoms of leukaemia. Early diagnosis saves lives. Find out more about how you can get involved on our website - www.leukaemiacare.org.uk/
NicoleLeukaemiaCare
in
Leukaemia Support
7 years ago
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TPLL
Hi I'm from Australia and have been diagnosed with Tcell prolymphacytic leukaemia and wondering if anyone here has it. I'm on watch and wait ATM. Diagnosed a month ago due to inconsistent white blood cell counts.
Hi I'm from Australia and have been diagnosed with Tcell prolymphacytic leukaemia and wondering if anyone here has it. I'm on watch and wait ATM. Diagnosed a month ago due to inconsistent white blood cell counts.
Littlenanna
in
Leukaemia Support
7 years ago
UPDATE ON: Help! 31yr old newly diagnosed CLL.
UPDATE: hi everyone.... Just wanted to post an update on my brother and say thank you to everyone for all the info.... Really helped us have intelligent and productive conversations with our new doctor at Yale today. We saw the new doc. He was amazing. We spent 2+hrs explaining everything anyone ever
UPDATE: hi everyone.... Just wanted to post an update on my brother and say thank you to everyone for all the info.... Really helped us have intelligent and productive conversations with our new doctor at Yale today. We saw the new doc. He was amazing. We spent 2+hrs explaining everything anyone ever
Jade263
in
CLL Support
7 years ago
Verastem, with Phase 3 Results, to Request FDA Approve Oral Duvelisib to Treat Advanced CLL and SLL
Verastem’s duvelisib was seen to outperform Arzerra (ofatumumab) in a Phase 3 trial of patients with relapsed or refractory chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL), the company announced. The oral therapy nearly halved the risk of disease progression or death, and held
Verastem’s duvelisib was seen to outperform Arzerra (ofatumumab) in a Phase 3 trial of patients with relapsed or refractory chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL), the company announced. The oral therapy nearly halved the risk of disease progression or death, and held
wmay13241
in
CLL Support
7 years ago
TOMORROW Live MPN Treatment Webinar!
What new treatments are in development for myeloproliferative neoplasms (MPNs)? What are the considerations when choosing a treatment plan? In this hour-long LIVE webinar on Tuesday 8/29 5 pm PT/8 pm ET , Dr. Bart Scott from Seattle Cancer Care Alliance and Dr. David Snyder from City of Hope will help
What new treatments are in development for myeloproliferative neoplasms (MPNs)? What are the considerations when choosing a treatment plan? In this hour-long LIVE webinar on Tuesday 8/29 5 pm PT/8 pm ET , Dr. Bart Scott from Seattle Cancer Care Alliance and Dr. David Snyder from City of Hope will help
tclementi
in
MPN Voice
7 years ago
I'm new here, I go under the name of Briarowl
I have just been diagnosed with
Acute
Myeloid
Leukaemia
. I see the haematologist next week to talk about treatment, but in the meantime I have had my Hydroxy doubled. I have a feeling it has increased my tiredness and I get a lot of pain in my chest. Does anyone else have this problem?
I have just been diagnosed with
Acute
Myeloid
Leukaemia
. I see the haematologist next week to talk about treatment, but in the meantime I have had my Hydroxy doubled. I have a feeling it has increased my tiredness and I get a lot of pain in my chest. Does anyone else have this problem?
Briarowl
in
Leukaemia Support
7 years ago
chlorambucil + obinutuzumba
I am 68 and untreated and been on W&W for 5 years. I have an enlarged lymph node on neck and one smaller to side of face. They don't hurt but are bothersome. My doctor has recommended chlorambucil and obinutuzumba as treatment for 6 months. Has anyone had experience with this combination? Also considering
I am 68 and untreated and been on W&W for 5 years. I have an enlarged lymph node on neck and one smaller to side of face. They don't hurt but are bothersome. My doctor has recommended chlorambucil and obinutuzumba as treatment for 6 months. Has anyone had experience with this combination? Also considering
eoravillo
in
CLL Support
7 years ago
Leaking bone marrow??
I'm wondering if anyone can shed light on a red swelling I have on my leg. It came up quickly over a couple of days, is tender and my calf is a bit swollen. My haematologist says something about leaking bone marrow?? I have post PV Myelofibrosis.
I'm wondering if anyone can shed light on a red swelling I have on my leg. It came up quickly over a couple of days, is tender and my calf is a bit swollen. My haematologist says something about leaking bone marrow?? I have post PV Myelofibrosis.
Fika500
in
MPN Voice
7 years ago
Australians can be denied life insurance based on genetic test results, and there is little protection. How does your country compare?
[i]Under Australian law, life insurance applicants must disclose any known genetic test results if requested by the insurer. This includes results from approved clinical genetic tests, but also less reliable findings from research or direct-to-consumer (DTC) genetic tests, if they are known to the applicant
[i]Under Australian law, life insurance applicants must disclose any known genetic test results if requested by the insurer. This includes results from approved clinical genetic tests, but also less reliable findings from research or direct-to-consumer (DTC) genetic tests, if they are known to the applicant
AussieNeil
Partner
in
CLL Support
7 years ago
Exercise after a cancer diagnosis, how regular activity can help to alleviate fatigue
Watch Leukaemia CARE's new video on the importance of exercise http://www.leukaemiacare.org.uk/useful-links-on-exercise Regular activity can help to alleviate fatigue; even a small increase in activity can help to improve your energy levels.
Watch Leukaemia CARE's new video on the importance of exercise http://www.leukaemiacare.org.uk/useful-links-on-exercise Regular activity can help to alleviate fatigue; even a small increase in activity can help to improve your energy levels.
Esther07
in
Leukaemia Support
7 years ago
CLLSA Cancer Awareness Month
A video for you to share has been posted on the CLLSA Facebook page and Twitter along with a request to answers to a few questions that might help others when diagnosed with cll https://www.facebook.com/CLLSA-CLL-Support-Association-1016024785086154/
A video for you to share has been posted on the CLLSA Facebook page and Twitter along with a request to answers to a few questions that might help others when diagnosed with cll https://www.facebook.com/CLLSA-CLL-Support-Association-1016024785086154/
Myrddin
in
CLL Support
7 years ago
Are you a young person wanting to talk about your diagnosis ?
You can speak to a member of our team at Leukaemia CARE during the daytime or evening ,we are available 24 hours a day , 7 days a week. Our Nurse advisor is back next week and available on a Wednesday and Friday evenings between 7.30-10.30pm on our freephone number 08088 010 444. To meet with other
You can speak to a member of our team at Leukaemia CARE during the daytime or evening ,we are available 24 hours a day , 7 days a week. Our Nurse advisor is back next week and available on a Wednesday and Friday evenings between 7.30-10.30pm on our freephone number 08088 010 444. To meet with other
Esther07
in
Leukaemia Support
7 years ago
Nplate causing "giant platelets"
Had anyone else had "Giant Platelets : Present" on their labs after just starting Nplate? Anyone at all? Trying to find out why this is happening and if it is normal / safe or even expected from Nplate treatment. 2nd injection is tomorrow. Platelets went from 10 to 13 one week after first injection
Had anyone else had "Giant Platelets : Present" on their labs after just starting Nplate? Anyone at all? Trying to find out why this is happening and if it is normal / safe or even expected from Nplate treatment. 2nd injection is tomorrow. Platelets went from 10 to 13 one week after first injection
HappyHopeful
in
ITP Support Association
7 years ago
painful hands
ive had lupus for 20 years with symptoms ever changing my recent symptom is wrist thumb joint pain i went addenbrookes yesterday to the hand clinic they didnt have a clue. they are sending me to the nerve study clinic does anyone have any ideas as im in pain all the time
ive had lupus for 20 years with symptoms ever changing my recent symptom is wrist thumb joint pain i went addenbrookes yesterday to the hand clinic they didnt have a clue. they are sending me to the nerve study clinic does anyone have any ideas as im in pain all the time
loopyloopy
in
LUPUS UK
7 years ago
One Week Until Final Clinical Trial Mythbusters Webinar!
Is there medical research going on that is open to you and could be the key to feeling better? That’s what a clinical trial can be, but many people are unaware, hesitant, afraid, or stymied by logistics. It doesn’t have to be that way and we can help. Please tune in live or as a replay to Patient Empowerment
Is there medical research going on that is open to you and could be the key to feeling better? That’s what a clinical trial can be, but many people are unaware, hesitant, afraid, or stymied by logistics. It doesn’t have to be that way and we can help. Please tune in live or as a replay to Patient Empowerment
tclementi
in
CLL Support
7 years ago
*FREE INFORMATION DAY*Come along to our Young People Versus Blood Cancer Day Trekstock & Leukaemia CARE
Book your free place today , the afternoon session is for patients and carers and hosted jointly by Trekstok & Leukaemia CARE in London on the 23rd September. https://www.eventbrite.co.uk/e/young-people-against-blood-cancer-information-day-tickets-32880028049?aff=WebsiteText Talks on fertility, stem
Book your free place today , the afternoon session is for patients and carers and hosted jointly by Trekstok & Leukaemia CARE in London on the 23rd September. https://www.eventbrite.co.uk/e/young-people-against-blood-cancer-information-day-tickets-32880028049?aff=WebsiteText Talks on fertility, stem
Esther07
in
Leukaemia Support
7 years ago
Just putting a tentative toe in the on line world!
Although I am new to the on line community I was diagnosed as having CLL a bit over nine years ago now, was treated was chlorambucil and then with FCR the following year. I guess I was lucky in that I only needed three courses rather than the usual six for my white cell count to come right down. And
Although I am new to the on line community I was diagnosed as having CLL a bit over nine years ago now, was treated was chlorambucil and then with FCR the following year. I guess I was lucky in that I only needed three courses rather than the usual six for my white cell count to come right down. And
Patientgill
in
CLL Support
7 years ago
Some promising news from iwCLL On Richter's Transformation
Hi, One of the most urgent unmet needs in CLL is Richter's Transformation when CLL turns bad and transforms into usually an aggressive diffuse B cell lymphoma. At the iwCLL meeting in Manhattan last May, I had the chance to talk to Dr. John Pagel about the research being done with PD-1 inhibitors for
Hi, One of the most urgent unmet needs in CLL is Richter's Transformation when CLL turns bad and transforms into usually an aggressive diffuse B cell lymphoma. At the iwCLL meeting in Manhattan last May, I had the chance to talk to Dr. John Pagel about the research being done with PD-1 inhibitors for
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
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