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CLL Support

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All posts for March 2019

facial rash with imbruvica

my facial rash is more like acne than a typical rash any similar experiences? Concerns? Suggestions?

my facial rash is more like acne than a typical rash any similar experiences? Co...

trailtrimmer

•6 years ago

15 Replies

NEW CLL Member Needs Updates!

New addition to the community! Am 62, a type-1 diabetic with recent diagnosis of CLL. Had a bone marrow biopsy showing 75% affect on white blood cell...

New addition to the community! Am 62, a type-1 diabetic with recent diagnosis o...

Floorfax

•6 years ago

5 Replies

Ibrutinib. To take or not?

Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine...

Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after bein...

Benny12

•6 years ago

20 Replies

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FEELING GREAT..OFF ALL PILLS

NO MORE PILLS FOR ME...JUST HEALTHY EATING,EXERCISE AND PRAYERS.THANKS FOR ALL YOUR EMAILS,POSTS, AND PRAYERS..GOOD LUCK EVERYONE AND STAY HEALTHY.TLCLADY...

NO MORE PILLS FOR ME...JUST HEALTHY EATING,EXERCISE AND PRAYERS.THANKS FOR ALL Y...

tlcladygiraffe

•6 years ago

3 Replies

Anyone with CLL, MDS/MPN ?

My Oncologist keeps telling me about this very rare combo of my blood cancers I have! I not only have CLL but also MDS/MPN. The article of my rare blood...

My Oncologist keeps telling me about this very rare combo of my blood cancers I ...

Mimi4times

•6 years ago

11 Replies

Cll

Good morning everyone from the uk hope you are all well and feeling a little better best wishes clubland x

Good morning everyone from the uk hope you are all well and feeling a little bet...

Hidden

•6 years ago

1 Reply

Ibrutinib/Imbruvica and Fatigue: How strong is the connection?

Originally sent this response a few hours ago to family who had a CLL plus breast cancer challenges! The wife in this post was speaking to the issue of her...

Originally sent this response a few hours ago to family who had a CLL plus breas...

leopardo

•6 years ago

5 Replies

Is fatigue always a side effect of long term use of Ibrutinib?

This post was originally sent as a response to Larington, who last posted 4 years ago! I am new to this support group. But I a now repeating the original...

This post was originally sent as a response to Larington, who last posted 4 year...

leopardo

•6 years ago

7 Replies

If you can't physically make it to Bethesda on April 5 for our NIH CLL Society Educational forum, you can still attend virtually

I am looking forward to revisiting the NIH and meeting again with their world class CLL team for 1/2 day CLL Educational Forum. We even will have Richard...

I am looking forward to revisiting the NIH and meeting again with their world cl...

bkoffman

CLL CURE Hero•6 years ago

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Quick question

Quick question What is the significance of NRBC being high when the rest of the results are consistent.... lymphocytes a bit lower than 4 months ago but still...

Quick question What is the significance of NRBC being high when the rest of the...

1ofakind

•6 years ago

13 Replies

New bloodwork

New bloodwork looks hopeful. I realize that wbc can go up or down with this cruel disease... but my hubbys has dropped by 24000 in 5 weeks. The lump abs has...

New bloodwork looks hopeful. I realize that wbc can go up or down with this crue...

Floridagirl49

•6 years ago

17 Replies

Due to start treatment but confused!!!

I am due to start treatment soon and have all the right markers for FCR. Would it be better to go into the Flair trial? This whole chemo thing scares me. If I...

I am due to start treatment soon and have all the right markers for FCR. Would ...

Racing1961

•6 years ago

29 Replies

IGm, CLL, Amyloidosis and Polyneuropathy

I’m at hospital again today, waiting in line to see my cardiologist to discuss my recently diagnosed Amyloidosis. Same time last week I was with my Oncologist...

I’m at hospital again today, waiting in line to see my cardiologist to discuss m...

Kods

•6 years ago

7 Replies

High Dose Ozone as a treatment

Hi ALL I've recently been diagnosed and am stage O so just researching ways to boot the immune system which has to be a good thing to slowing down the progress...

Hi ALL I've recently been diagnosed and am stage O so just researching ways to b...

Satchitanada

•6 years ago

8 Replies

My 1 year CAR-T anniversary and from ASH 2018, Dr. Siddiqi on how CLL treatment has changed.

Hi March 22, 2019 was my one year anniversary of receiving my experimental CAR-T cells in Seattle. About a month earlier, I got the great news that I remain...

Hi March 22, 2019 was my one year anniversary of receiving my experimental CAR-T...

bkoffman

CLL CURE Hero•6 years ago

22 Replies

Ready ... Set ... Bone Marrow Biopsy

I was diagnosed in September 2018 with SLL - Small Lymphocytic Lymphoma, Stage 3. After W&W for 6 months my latest ct scan shows an increasing number of...

I was diagnosed in September 2018 with SLL - Small Lymphocytic Lymphoma, Stage 3...

Jemorgen

•6 years ago

17 Replies

Milk allergy?

Hi everyone just wondering I seem to have developed a severe allergy to goats milk ! I have only recently developed extremely painful stomach and can't get off...

Hi everyone just wondering I seem to have developed a severe allergy to goats mi...

Heidiypi1

•6 years ago

2 Replies

US Cancer Support Resource

https://www.cancersupportcommunity.org/free-housing-patients-traveling-cancer-treatment?utm_source=Airbnb%20CSC%20Announcement&utm_medium=email&utm_campaign=Air

https://www.cancersupportcommunity.org/free-housing-patients-traveling-cancer-tr...

Hidden

•6 years ago

3 Replies

New member am i in the right place ?

Hello please bear with me a moment . I'm new to this board but also belong to the thyroid hashimotos board and osteoarthritis . My latest problem is this and...

Hello please bear with me a moment . I'm new to this board but also belong to th...

pet-lamb

•6 years ago

4 Replies

How long before the benefits of Imbruvica wear off?

I have been taking Imbruvica for CLL for three months, with very positive results. Prior to starting the drug, my health was in a downward spiral, but now I...

I have been taking Imbruvica for CLL for three months, with very positive result...

TheTraveler

•6 years ago

9 Replies

Feeling numb

Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL. Currently I feel as well as a 59...

Just received the 2nd set of blood tests from an un-connected complaint, for the...

1-12-32

•6 years ago

26 Replies

Ibrutanib and sleep issues

Day 5 on ibrutanib. Really having issues with sleeping. I wake after two hours and have restless leg type symptoms and cannot get back to sleep. Have tried...

Day 5 on ibrutanib. Really having issues with sleeping. I wake after two hours a...

Tomogrady1

•6 years ago

6 Replies

Nutrition helped soreness

I had the pain in ankle for some months. I looked up posts of Dr. John Byrd at Ohio State, an expert on umbrivica. He recommends magnesium, calcium, vitamin D...

I had the pain in ankle for some months. I looked up posts of Dr. John Byrd at O...

Trilpub

•6 years ago

6 Replies

Dental Implants and CLL

Does anyone have experience with dental implants and CLL? I heard that they can cause infections as they go right into the jaw bone.

Does anyone have experience with dental implants and CLL? I heard that they can ...

splashsplash

•6 years ago

10 Replies

Effective Curcumin dosage for WBC count

I am 77 and have just been diagnosed with CLL. I currently have no symptoms. My WBC is 41k. I will be getting a full blood workup. I am looking for dosage...

I am 77 and have just been diagnosed with CLL. I currently have no symptoms. M...

toughba

•6 years ago

5 Replies

reduced intensity transplant

If your over 50 and need a stem cell transplant it most likely will be low intensity. It also goes by mini-transplant or RIC transplant. It is NOT a standard...

If your over 50 and need a stem cell transplant it most likely will be low inten...

Hidden

•6 years ago

1 Reply

Sore hands and nails!

Morning....my husbands has been on IB (first line) since October. He’s had a few ups and downs plus the common side effects of rashes/extremely dry skin...

Morning....my husbands has been on IB (first line) since October. He’s had a few...

Starky67

•6 years ago

3 Replies

Headaches

When you have CLL are you more prone to get headaches? I get frequent headaches that seem to start in the top part of my neck in the back. It seems like it’s...

When you have CLL are you more prone to get headaches? I get frequent headaches ...

blairzy

•6 years ago

8 Replies

Hemoglobin worse after 4 week on Venetoclex

After 4 weeks on venetoclex, my ALC is less than 2000, which in itself is good. However, hemoglobin and platelets are worse than they were 2 1/2 weeks ago...

After 4 weeks on venetoclex, my ALC is less than 2000, which in itself is good. ...

profrich

•6 years ago

13 Replies

Aching muscles

Hi guys can anyone help or at least let me know we are not alone with this My husband completed 6 months of FCR chemo FOR CLL finishing last November....

Hi guys can anyone help or at least let me know we are not alone with this My h...

Sailormoon11

•6 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2019

facial rash with imbruvica

NEW CLL Member Needs Updates!

Ibrutinib. To take or not?

FEELING GREAT..OFF ALL PILLS

Anyone with CLL, MDS/MPN ?

Cll

Ibrutinib/Imbruvica and Fatigue: How strong is the connection?

Is fatigue always a side effect of long term use of Ibrutinib?

If you can't physically make it to Bethesda on April 5 for our NIH CLL Society Educational forum, you can still attend virtually

Quick question

New bloodwork

Due to start treatment but confused!!!

IGm, CLL, Amyloidosis and Polyneuropathy

High Dose Ozone as a treatment

My 1 year CAR-T anniversary and from ASH 2018, Dr. Siddiqi on how CLL treatment has changed.

Ready ... Set ... Bone Marrow Biopsy

Milk allergy?

US Cancer Support Resource

New member am i in the right place ?

How long before the benefits of Imbruvica wear off?

Feeling numb

Ibrutanib and sleep issues

Nutrition helped soreness

Dental Implants and CLL

Effective Curcumin dosage for WBC count

reduced intensity transplant

Sore hands and nails!

Headaches

Hemoglobin worse after 4 week on Venetoclex

Aching muscles

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