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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
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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
Are there any targeted drugs that only kill cancerous wbc?
I have very high wbc,and will probably be given calquence which I thought only targeted cancerous cells, however, after talking to my consultant apparently this is not true. I don't understand why it is called a targeted drug if it kills healthy red and white blood cells, leaving you vulnerable
I have very high wbc,and will probably be given calquence which I thought only targeted cancerous cells, however, after talking to my consultant apparently this is not true. I don't understand why it is called a targeted drug if it kills healthy red and white blood cells, leaving you vulnerable
PACWOMAN
in
CLL Support
2 years ago
Hurray, Three Cheers for Venclexta & Rituxan
After 10 years, 5 months and 24 days since a Stage IV diagnosis of CLL, including 8 rounds of chemo/immunotherapy, I have been found to have no residual cancer cells after a bone marrow biopsy at Dana Farber on July 21, 2022! Three cheers for 6 doses of Rituxan and 24 months of Venclexta!! I have
After 10 years, 5 months and 24 days since a Stage IV diagnosis of CLL, including 8 rounds of chemo/immunotherapy, I have been found to have no residual cancer cells after a bone marrow biopsy at Dana Farber on July 21, 2022! Three cheers for 6 doses of Rituxan and 24 months of Venclexta!! I have
KevinCLLITP
in
CLL Support
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
CLL SOCIETY: THIS WEEK September 13, 2022 (Newsletter)
Elizabeth Brem who specializes in
lymphomas
at UC Irvine. The episode discusses the importance of including patients in the process of planning for treatment in CLL/SLL. Also Dr.
Elizabeth Brem who specializes in
lymphomas
at UC Irvine. The episode discusses the importance of including patients in the process of planning for treatment in CLL/SLL. Also Dr.
lankisterguy
Volunteer
in
CLL Support
2 years ago
Kyverna Asks FDA to Begin Clinical Test on Lupus Nephritis Treatment
The National Cancer Institute sponsored a Phase 1/2 study (NCT02659943) that tested KYV-101 in 20 people with B-cell cancers (
lymphomas
).
The National Cancer Institute sponsored a Phase 1/2 study (NCT02659943) that tested KYV-101 in 20 people with B-cell cancers (
lymphomas
).
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
CCL - Debilitating exhaustion
I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for
I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for
PAgrandmom
in
CLL Support
2 years ago
Creatinine elevated on CLL
I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this situation? Any suggestions? Thank you
I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this situation? Any suggestions? Thank you
farber
in
CLL Support
2 years ago
Dostarlimab - Check point inhibitor
Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who had Colorectal cancer. Now all the patients have been cured and all treatment stopped. The best part was that the new drug had minimal side effects
Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who had Colorectal cancer. Now all the patients have been cured and all treatment stopped. The best part was that the new drug had minimal side effects
nuji
in
CLL Support
2 years ago
COVID update: Who remains at higher risk? by LLS.org
People with the following types of blood cancer are less likely to develop protective antibodies and they are less able to fight off an infection because the cancer affects immune B-cells: • Chronic lymphocytic leukemia • Diffuse large B-cell
lymphomas
• Follicular lymphoma • Marginal zone lymphoma
People with the following types of blood cancer are less likely to develop protective antibodies and they are less able to fight off an infection because the cancer affects immune B-cells: • Chronic lymphocytic leukemia • Diffuse large B-cell
lymphomas
• Follicular lymphoma • Marginal zone lymphoma
lankisterguy
Volunteer
in
CLL Support
1 year ago
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