Wait& watch with Cll: My mom,75yrs of age was... - CLL Support

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Wait& watch with Cll

guptasanjay285 profile image
11 Replies

My mom,75yrs of age was detected with Cll In 2012. All was fine until last 15 days,when her wbc count went up to 1.5 lacks and 95% mature looking lymphocytes.Dr has recommended to start BR regimen, but all our family members are against use of chemo.she is slowly loosing her sense and could hardly recognize person's. Kindly suggest some natural therapies,if anyone has in his mind.

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guptasanjay285 profile image
guptasanjay285
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11 Replies
GMa27 profile image
GMa27

Natural does not work. Been doing acupuncture and homeopathic remedies for years. Had chemo and did great. I am in remission.

AussieNeil profile image
AussieNeilAdministrator

Welcome to you and your Mom from our community. Lymphocyte count and maturity are not triggers for starting treatment, but how fast the lymphocyte count is growing may be. This post explains the indications for starting treatment: healthunlocked.com/cllsuppo...

I appreciate that given your mother's health deterioration, (which is unlikely to be related to her CLL), putting her through chemotherapy based treatment would be distressing for her and her family.

With respect to natural therapies, they too can have side effects. Is your mother experiencing any distress from her CLL? Arguably the most likely natural treatment that may reduce her lymphocyte count and swollen lymph nodes, is high dose green tea. The recommended dose is enough to provide 2 grams of the active ingredient EGCG twice per day. That can cause digestive upset and may be toxic to you Mom's liver. If your mother isn't having concerning symptoms from her CLL, she may just prefer to not have any treatment. Are her platelet and haemoglobin counts satisfactory?

Neil

seelel profile image
seelel

Hello Sanjay,

I will just add to what the others have said:

A WBC of 150,000 on its own is not necessarily a reason to start treatment. There are other factors involved.

Perhaps you could post more information on your mother's blood counts.

seelel profile image
seelel in reply to seelel

Also, are you resident in India or elsewhere?

It could make a difference to treatment available.

Marie-54 profile image
Marie-54

Do you want your mother to live? Take the chemo, there is no 'natural' remedy that will help her at this time. The chemo is not that hard to do, and I did not even lose my hair. She will be much better off having done it.

does she have markers that would preclude chemo?

Cammie profile image
Cammie

You need much more information before you even attempt to make any decisions.

As was previously posted a high lymphocytes count on its own is not a reason to start treatment.

You must investigate what other symptoms are presented due to cll.

I totally agree with those who have warned against natural therapies. As Neil says it is common for these to also have side effects.

The other thing to bear in mind is any comorbitities your mother suffers from such as dementia, heart problems, lung problems etc etc as treatments can possibly make things even more uncomfortable for your mother.

The first step is surely to discuss with your mothers doctors why they are suggesting treatment and what their objectives are forgiving the treatment they have suggested. You need to discuss comorbitities and get a complete picture of your mothers health. It may be that you need to discuss the situation with any or all specialist medical people your mother may be seeing.

I fully appreciate that different countries have different regimes and drug availability but the first thing to get clear is why the medics are recommending treatment and why the specific drugs they have recommended.

You can then move on from there knowing both the prognosis and recommendations prior to making any decisions with your parent.

Smakwater profile image
Smakwater

guptasanjay285,

Although there are testimonials promoting various natural therapies for CLL, I have not found any credible clinical data that suggest it is worth the effort.

I apologize for providing only a complex scholarly article about chlorambucil and rituximab, however, I believe that it is still a prominent choice for elderly patients with underlying health concerns.

ncbi.nlm.nih.gov/pmc/articl...

Hope you find what you are looking for,

JM

onu1tadi2 profile image
onu1tadi2

The new treatments are not the same as traditional Chemo. They use targeting and signalling messages sent by antibodies. And when administered, the preparatory drugs make the IV procedure easy and painless. These target bad cells more than good ones. The days of hair falling out Chemo are over. She needs to be encouraged to go on a treatment regime. Antibodies are part of nature too. The supplements are useful in keeping up one's strength and overall health once on the treatment. See what her doctor offers and people in this group can inform you of their own experiences. I was diagnosed at stage 4, at age 73. Got Obin and Gazyva --- antibody targeting plus a low dose chemo. This is because Ibrutinib was not offered as first line. Now I am on Ibrutinib. No symptoms yet after a week. But the 6 months of Obin and Gazyva did not cause my hair to fall out, no rashes, no vomiting, no headaches...basically no symptoms except fatigue at the time white blood count was lowered --- then it slowly built up to normal and i felt better during the months of remission than i had in years. All is possible. Please do not have her wait until it is too late. Best wishes to you and your family.

Canuck901 profile image
Canuck901

There are other treatments besides chemo , ask about the flair trial , huge success with ibruntnib and Venetoclax

pbaddi profile image
pbaddi

Hi Sanjay,

Are you from India ? if yes I would like to discuss some points.

Kindly contact me via PM (Email address removed for your safety and privacy - Admin)

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