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He’s home! Hurrah!
After 7 weeks in hospital my husband is home. Initially they were treating him for an infection and no antibiotics were touching it. It was only when they got the bone marrow culture showing Hodgkins transformation that he turned a corner. The ABVD chemo was a game changer. He had two chemos in hospital
After 7 weeks in hospital my husband is home. Initially they were treating him for an infection and no antibiotics were touching it. It was only when they got the bone marrow culture showing Hodgkins transformation that he turned a corner. The ABVD chemo was a game changer. He had two chemos in hospital
Fowey2009
in
CLL Support
2 years ago
Allopurinol with V &O treatment for CLL
Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta treatment? How long did you take it and has anyone had an allergic reaction to it?
Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta treatment? How long did you take it and has anyone had an allergic reaction to it?
Gradyboy
in
CLL Support
2 years ago
My MD Anderson doctor is leaving
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
Lisa-1959
in
CLL Support
2 years ago
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Starting treatment
Hello everyone, I've been on W&W Since Jan 2020. Two weeks ago at my consultation my consultant said its time for treatment, that week I had a CT scan, blood tests and an echo heart test. My next step I assumed would be a meeting regarding my treatment, however she called today to say I need a pet
Hello everyone, I've been on W&W Since Jan 2020. Two weeks ago at my consultation my consultant said its time for treatment, that week I had a CT scan, blood tests and an echo heart test. My next step I assumed would be a meeting regarding my treatment, however she called today to say I need a pet
mfc86
in
CLL Support
2 years ago
Internet censorship?
Internet censorship of medical information? As I mentioned before, I had anaphylactic shock during first infusion with obinutuzumab, which does not appear to be uncommon. There was a man across from me in my last infusion group who had same reaction. Quick witted infusion nurse jabbed me with EpiPen
Internet censorship of medical information? As I mentioned before, I had anaphylactic shock during first infusion with obinutuzumab, which does not appear to be uncommon. There was a man across from me in my last infusion group who had same reaction. Quick witted infusion nurse jabbed me with EpiPen
Big_Dee
in
CLL Support
2 years ago
test interpretation
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
DianeSH
in
CLL Support
2 years ago
All good things must come to an end
I just had my 3 month checkup and it looks like my Ibrutinib is starting to stop keeping my counts in check. They have not gone crazy but have been slowing rising this past year and actually doubled over a 6 month period. My Doctor thinks it's probably good to look at another treatment while I am still
I just had my 3 month checkup and it looks like my Ibrutinib is starting to stop keeping my counts in check. They have not gone crazy but have been slowing rising this past year and actually doubled over a 6 month period. My Doctor thinks it's probably good to look at another treatment while I am still
rcusher
in
CLL Support
2 years ago
Another 6 month checkup done
Hi all. I just thought I would share my good news. After the last 6 months of having a tooth removal, a root canal, 7 crowns and a bridge all under a general anesthetic and finally getting to go on our postponed dive holiday to South East Sulawesi Indonesia from 2020, it was more good vibes with all
Hi all. I just thought I would share my good news. After the last 6 months of having a tooth removal, a root canal, 7 crowns and a bridge all under a general anesthetic and finally getting to go on our postponed dive holiday to South East Sulawesi Indonesia from 2020, it was more good vibes with all
Dragonspen
in
CLL Support
2 years ago
Vitamin K2 for bones - how much, how frequent?
Hi, I have random question for anyone on here who is taking Vitamin K2 to support their calcium/magnesium/D3 intake for bones compromised by coeliac and/or allergic or intolerant to dairy. I do take a dropper type of K2 (oil based) which is pricey, and looking at cheaper brands that are pill based (basic
Hi, I have random question for anyone on here who is taking Vitamin K2 to support their calcium/magnesium/D3 intake for bones compromised by coeliac and/or allergic or intolerant to dairy. I do take a dropper type of K2 (oil based) which is pricey, and looking at cheaper brands that are pill based (basic
Hidden
in
Gluten Free Guerrillas
2 years ago
Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
lankisterguy
Volunteer
in
CLL Support
2 years ago
Half (3 areas) of my cancer cells are gone!!!!
Hello! I want to share some good news. I am on Watch and Wait. I only do non traditional practices like eating cactus, ginger, tumeric, green drinks (celery, kale, cucumbers, cactus, sometimes with fruits , etc. If you read my post, I have tried CBD, Inositol, I PRAY A Lot. I was diagnosed in 2017
Hello! I want to share some good news. I am on Watch and Wait. I only do non traditional practices like eating cactus, ginger, tumeric, green drinks (celery, kale, cucumbers, cactus, sometimes with fruits , etc. If you read my post, I have tried CBD, Inositol, I PRAY A Lot. I was diagnosed in 2017
BLP1211
in
Non Hodgkin's Lymphoma Friends
2 years ago
Had a blood test at GP's, not for CLL
I was called to my GP's for a blood test related to my new heart medication. I also had an Echocardigram and a 24 hour monitoring tape. Surprise, surprise no one seems to know where they have sent the results. I have telephoned every department I can think of but no one admits to knowing anything!!
I was called to my GP's for a blood test related to my new heart medication. I also had an Echocardigram and a 24 hour monitoring tape. Surprise, surprise no one seems to know where they have sent the results. I have telephoned every department I can think of but no one admits to knowing anything!!
kitchengardener2
in
CLL Support
2 years ago
Does Covid boost ALS?
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
JDG45
in
CLL Support
2 years ago
Husband's Ventoclax Ramp Up Goes Smoothly!
Here in California, the temperature reached 120 degrees on the first day of my husband's Ventoclax Ramp Up. Our power went out, and without AC, it was definitely a day to remember! On the positive side, he followed his specialist's instructions, labs followed by ventoclax medication, followed by more
Here in California, the temperature reached 120 degrees on the first day of my husband's Ventoclax Ramp Up. Our power went out, and without AC, it was definitely a day to remember! On the positive side, he followed his specialist's instructions, labs followed by ventoclax medication, followed by more
lisakc1
in
CLL Support
2 years ago
Son in Canada looks to Germany for treatment
Our 56 year old son started with colon cancer, which progressed to lung cancer and now a tumor has been discovered by his sciatica nerve. He has been continually been sent for more radiation treatments that don't seem to be working. He has heard of a doctor in Germany who uses different techniques
Our 56 year old son started with colon cancer, which progressed to lung cancer and now a tumor has been discovered by his sciatica nerve. He has been continually been sent for more radiation treatments that don't seem to be working. He has heard of a doctor in Germany who uses different techniques
CCgroup
in
CLL Support
2 years ago
Good News Train
Hello CLLers Due to my very aggressive ALC doubling every 3 months and massive abdominal lymph nodes, my H/O thought I might have large cell lymphoma on top of my relapsing CLL. I was scheduled for abdominal lymph node biopsy on Sept 7th, but as luck would have, it saw my CLL Specialist on August 24th
Hello CLLers Due to my very aggressive ALC doubling every 3 months and massive abdominal lymph nodes, my H/O thought I might have large cell lymphoma on top of my relapsing CLL. I was scheduled for abdominal lymph node biopsy on Sept 7th, but as luck would have, it saw my CLL Specialist on August 24th
Big_Dee
in
CLL Support
2 years ago
trisomy 12 dx with cll
cll and trisomy 12. Any information will help alleviate fears
cll and trisomy 12. Any information will help alleviate fears
Pokerplayer1
in
CLL Support
2 years ago
recent immunotherapy trial results
In reading the recent immunotherapy trial reports it has me worried and it makes me wonder if my husband will go into remission...He is doing very well (with no side affects) in a Dana-Farber study (he is on Acalabrutinib- since March and Obinutuzuimab IV (last dose in August) and Venetoclax). The
In reading the recent immunotherapy trial reports it has me worried and it makes me wonder if my husband will go into remission...He is doing very well (with no side affects) in a Dana-Farber study (he is on Acalabrutinib- since March and Obinutuzuimab IV (last dose in August) and Venetoclax). The
spi3
in
CLL Support
2 years ago
Need Urgent help for CAR-T therapy
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
nuji
in
CLL Support
2 years ago
Finishing line for Pirtobrutinib (Loxo) & Venetoclax combination trial.
I have just completed the 2 year combination clinical trial with Pirtobrutinib and Venetoclax - I think a small study of us in Australia. ( Also worldwide) This has resulted in no detectable cancer in my blood and lymph nodes- woohoo! My last Bone Marrow test showed just outside the non detectable parameter
I have just completed the 2 year combination clinical trial with Pirtobrutinib and Venetoclax - I think a small study of us in Australia. ( Also worldwide) This has resulted in no detectable cancer in my blood and lymph nodes- woohoo! My last Bone Marrow test showed just outside the non detectable parameter
Billarina
in
CLL Support
2 years ago
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