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TPLL
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
Whatadayitwas
in
CLL Support
3 years ago
Rosemary - another anti-leukemia spice!
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
HowardR
in
CLL Support
3 years ago
Update from my Appointment
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Moonmyst
in
CLL Support
4 years ago
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CLL Australian Webinar 21 October 2020. Keynote speaker Prof Peter Hillmen, Leeds UK. Interview of Sharon Winton CEO Lymphoma Australia, Q&A
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
AussieNeil
Administrator
in
CLL Support
4 years ago
TREATMENT OPTION FOR TRISOMY 12
Hi Dr. Aussie Neil! I am pleased to write to you once again about my test result. As i previously indicated, a year ago i was diagnosed with CLL Rai Stage II B and put on R-CVP chemoimmunoterapy and now 4 months since i took the last 6th infusion of 6 cycles recommended for my treatment. But still i
Hi Dr. Aussie Neil! I am pleased to write to you once again about my test result. As i previously indicated, a year ago i was diagnosed with CLL Rai Stage II B and put on R-CVP chemoimmunoterapy and now 4 months since i took the last 6th infusion of 6 cycles recommended for my treatment. But still i
amaagabg2020
in
CLL Support
4 years ago
Ultra V - Cycle 4
Hi, all, I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1) He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping.
Hi, all, I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1) He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping.
WDSmith
in
CLL Support
4 years ago
Some good news and hope
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
Irishcll
in
CLL Support
4 years ago
Newly diagnosed and hoping for a bit of advice
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Pdaquinas
in
CLL Support
4 years ago
Anyone have experience with Venclexta capped at 200 mg?
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
Flute117
in
CLL Support
4 years ago
When to expect a reoccurance of large B cell lymphoma and what is the treatment?
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
Dlindquist54
in
Non Hodgkin's Lymphoma Friends
4 years ago
Rituxan
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Vintagemama
in
CLL Support
4 years ago
New question regarding criteria
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
JennaShi
in
LUPUS UK
4 years ago
Hi I’m new here.
Treatment with Bendamustine and rituximab for follicular lymphoma stage 4. Very fatigued! Anyone else?
Treatment with Bendamustine and rituximab for follicular lymphoma stage 4. Very fatigued! Anyone else?
Sinsusie
in
Lymphoma Canada
4 years ago
Free Prescription home deliveries appear to have been stopped by Boots
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Harvist
in
CLL Support
4 years ago
Onion and garlic. Starting to feel sane!
I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid. About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole
I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid. About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole
RosieA
in
LUPUS UK
4 years ago
Chemo effects
Hi, 49 year old, been on watch and wait for 2 and a half years, but now have a very large node in groin. Anyway, I have to get some treatment, namely chemo and some sort of immunotherapy. I have read common effects of chemo (and I know everybody is different), but what has everybody here encountered
Hi, 49 year old, been on watch and wait for 2 and a half years, but now have a very large node in groin. Anyway, I have to get some treatment, namely chemo and some sort of immunotherapy. I have read common effects of chemo (and I know everybody is different), but what has everybody here encountered
Russ70
in
Non Hodgkin's Lymphoma Friends
4 years ago
HIGH MCV
Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it mean. Sent an e-mail to my Specialist and just waiting for a response. Below are my other labs and all feedback is welcome. Thank you all
Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it mean. Sent an e-mail to my Specialist and just waiting for a response. Below are my other labs and all feedback is welcome. Thank you all
Carrievc
in
CLL Support
4 years ago
Venetoclax started
Further to my recent post. I am pleased to say I am now home after my three days at RMH The team expected me to have TLS due to the size of my lymph nodes. They pumped me full of fluids and I had an infusion of rasburicase a few hours before Venetoclax. Thankfully my bloods showed no sign of TLS and
Further to my recent post. I am pleased to say I am now home after my three days at RMH The team expected me to have TLS due to the size of my lymph nodes. They pumped me full of fluids and I had an infusion of rasburicase a few hours before Venetoclax. Thankfully my bloods showed no sign of TLS and
aloneifly
in
CLL Support
4 years ago
Bendamustine with rituximab
my husband was diagnosed with CLL and will be starting on the above agents over the next 6 months. Anyone has experienced the same treatment before?
my husband was diagnosed with CLL and will be starting on the above agents over the next 6 months. Anyone has experienced the same treatment before?
gohmei
in
CLL Support
4 years ago
Vestibular problems
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Jmiller623
in
LUPUS UK
4 years ago
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