Reaching Out for Help For My 93 year old Mom; ... - CLL Support

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Reaching Out for Help For My 93 year old Mom; thanks

BaseballGardener
BaseballGardener
29 Replies

My mom is 93 years old, and was diagnosed with CLL 2 years ago. She is a saint, although I am sure that most children will say that about their moms. I would describe her health condition as fragile, she will easily bruise if she falls. We work hard to avoid her falling, but there are about 1 - 2 events each year. She uses a walker in the house, but for most outside activity, she does need a wheel chair. Her WBC has been climbing, over the last year it increased from 90,000 to 150,000. Her RBC and platelet counts have not changed much, but are about 10% lower than the low end of the expected range. I bring her to a well respected hospital located in the Northeast of USA. The opnion of the oncologist is not to take action, since her RBC and platelet counts are acceptable. I suggested to her oncologist that perhaps we could do a leukapharesis to at least drive down the WBC. He said we would never do leukapharesis with CLL patients, and the risk of the procedure for my mom would be too great. Now, it seems to me that almost anything that would be tried would be considered too risky. For 2 years we have only done W&W with hematology measurements every 90 days, which has made this a stressful period for me, her son, age 63. I am reaching out today, and would appreciate any thoughts on how to move forward. I am starting to realize that there is very little that can be done for my mom, if her condition worsens. What am I supposed to do, simply wait for a bad lab test, and the oncologist will start to recommend a course, but I will be warned that the risk of treatment is greater than the risk of managing the disease? Could my mom's biggest risk be a stroke, due to the bruising and complications of the CLL? I would greatly appreciate an objective, clinical opinion. Thank you so much for your help.

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Newdawn
NewdawnAdministrator

Hi there,

Your concern and love for your mother shines through every word you’ve written and of course you want the very best for her. Having lost my dear mum last year at 88, I understand that totally.

The best clinical advice is the one her oncologist has given you. Even if she were your age the indicators for starting treatment are not yet there (possibly not even if her ALC was doubling every 6 months at her advanced age).

All treatment can be tough and may even increase her fall risk. The important thing now is minimising that risk. An occupational therapist could do a full assessment of her environment. However, I know from my 91 yr old mother in law that the risk always exists even in a supervised place.

Her need is for quality of life now not quantity although we all want our loved ones to stay around as long as possible.

She sounds to be a lovely lady, happy and content and doesn’t need to spend her remaining days in doctor’s offices and hospitals. All treatment can impact on immunity initially and at the moment her main levels are holding nicely. That’s a very positive thing!

No doctor should treat purely on lymphocyte numbers and I think the advice you’ve received is both clinically, emotionally and socially sound.

Best wishes,

Newdawn

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BaseballGardener

Thanks so much for your response. I appreciate the time you took to reply in such an open and heartfelt way. My condolences on the lost of your mom last year, I know this has been a difficult time for you, so it means so much to me that you made that effort. Take care.

1 like
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Jm954
Jm954Administrator

Hi, you asked about leucopheresis specifically as a treatment for your Mom.

The procedure is not an easy one and puts some stress on the cardiovascular system as the blood is processed and then returned via two venflons. Its will also have very little impact on your mom's lymphocyte count and it could be back to the starting point within days.

Like Newdawn , I don't feel treatment is needed from what you've said and her quality of life is most important. Perhaps, if or when the time comes to discuss treatment ask about monotherapy with Rituximab or Obintuzumab. Both are monoclonal antibodies which can be very effective and are gentle treatment with few side effects.

best wishes

Jackie

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Smakwater
Smakwater
in reply to Jm954

I know that chlorambucil is used very little these days, however, in reading recently it appears that it is still used in cases similar to what baseballgardener describes as his mothers status.

Can you comment on this Jackie?

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Jm954
Jm954Administrator
in reply to Smakwater

Hi Smakwater ,

Chloambucil, generally with Obintuzumab, is recommended for frail CLL patients needing treatment.

However, that doesn't mean it's necessarily suitable for all elderly, frail patients as it is a type of chemotherapy. The doctor will weigh up the risks and benefits of any treatment they propose and should be prepared to discuss those with BaseballGardener and Mom so that they can choose what they feel is the best option for Mom's circumstances.

Wishing them all the best, I hope they let us know what they decide

Jackie

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Smakwater
Smakwater
in reply to Jm954

Thank You

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BaseballGardener

Thank you so much for your reply. The treatments you mentioned were actually what the oncologist had suggested, when the time was appropriate. He described it as "not chocolate cake", which did not ease my concerns. When and if we should reach that point, I would think the discussion would include thoughts about the risk of treatment being higher than no action at all. So, I don't want to get ahead of myself, we are just waiting and monitoring. Again, thanks for the time you made to reply, it is much appreciated. Take care.

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JigFettler
JigFettlerVolunteer

Hallo!

Its a tough one. I agree with the posts above, At 93 the treatment could well be worse than the CLL.

I feel that your Drs will know and be able to guide you.

Keep in touch though, and if you feel able your sharing will help others in a similar situation.

I really hope your mother does not need to suffer.

Very best wishes.

Jig

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BaseballGardener

Thanks for your reply and your support. I will stay in touch.

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MsLockYourPosts

You might, for your peace of mind, submit your mother's case to the cllsociety.org site's on line consult program. You would need an advanced directive or power of attorney for a doctor to be able to discuss her case with you, and I don't know whether that would be accepted. I can't see you dragging your mother around to specialists. I agree with the above posts. Quality of life is the most important thing you can strive for for your mother. I know that the inner child in us wants to fight for quantity. I've been there with both parents.

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BaseballGardener

Very true. Thanks for opening your heart and sharing. I reached out to the HealthUnlocked family in lieu of taking my mom for yet another opinion. Actually, we started with a local cancer center, which is part of the trauma hospital in Delaware, USA. We moved on to a better renowned facility in Maryland, USA, although it now appears that the 2 facilities are similar in their approach to treat my mom. I see no reason to try yet another opinion, so we just wait and continue monitoring. Take care.

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GMa27

My Dad had CLL for 30 years...dx in his 60's. Never needed treatment. Then when he was 92 the oncologist said if he were younger we may have treated, but why make him go thru it? So we didn't do anything. He lived 2 more quality years then passed away from his congestive heart failure. I have CLL and after 12 years on W&W I needed treatment at 63 years of age. I think if she is feeling ok....just let her enjoy her life. Treatment can bring side effects that could take away her quality of life. 💕

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BaseballGardener

Thank you for taking the time to share. This was great feedback, it sounds like your dad's case had some similarities which I can appreciate for my mom. Please let us know how you are doing, how long ago did you start the treatment, and is the treatment still ongoing, or are you back to W&W? I liked your advice, you have the experience to offer such wise advice. Thanks.

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GMa27

I had 3 rounds of IV FCR chemo last summer. I reached remission in 3 months! Feeling great. Port came out 6 months after treatment. My last checkup was May. Great blood work. I will be officially in remission one year next week. My next check up happens to be next week!! I feel like I am back on W&W. No problems as a result of chemo...in fact it helped me cure some major and minor things and for that I am grateful. Never thought I would be happy to say I am grateful for chemo. I had a horrible condition called gastroparesis. Google it. Dx 3 years ago. Incurable digestive disorder. Miracle...5 months after chemo, it disappeared! Hope that never comes back. And then minor things for ex. for 16 years I had to stop using nail polish on my toes. They cracked and didn't grow. Was disappointing cuz I had just moved to FL the year before and flip flops are basically everyday. LOL 4 months after chemo I noticed my nails grew and looked healthier. I enjoy my pedicures now and my colorful toes. Hugs for your mom! 💕

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BaseballGardener

This is fantastic news, congratulations! Sorry, I have not logged on in almost a month, but I am truly heartened to hear your good news. Where in Florida do you reside? My family lived in Florida for almost 30 years; we lived in Pembroke Pines, which is in the southern part of Broward County. I left FL over 20 years ago, due to a job relocation, and took my mom with me, as she is a widow. At 93, my mom's mobility has become increasingly impaired. Thankfully, she can still get around the house using a walker, but most journeys outside the house are not handled with a wheelchair. One of the problems I find with modern medicine is that there is a huge conflict these days on how medicine is practiced. We have doctors who are becoming increasingly specialized, but a holistic approach is needed because our bodies need to be treated as a single, unified organism. We hear that so and so died of complications of a disease, etc. We have specialists who try to single out a disease to treat, but doctors tend to avoid going outside their treatment zone. My mom developed a rash on her face, which I successfully treated as dermatitis. Her PCP said the rash was not dermatitis, and was probably due to the CLL. Her oncologist said the rash was not due to the CLL, but since the steroid cream I was using was clearing the rash up, he wrote me a script specifically for my mom. For cracked toe nails, who knows. This could have been a fungal infection, and now that your strength has improved your body can fight off the fungus more effectively. You may be experiencing positive results as a dividend to the fact that your body has become stronger due to the remission. I bet if you ask your oncologist, they will say something vague like "perhaps, could be, etc." Anyway, enjoy your good days which lie ahead; take care.

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GMa27

My cousins live in Pembroke Pines! Know the area! I live an hour north of them in North Palm Beach County. Right now we are getting ready for hurricane! 🙏

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BaseballGardener

I am a veteran of Hurricane Andrew, which gave me an entirely new appreciation of what a Cat 5 storm is all about. My mom and I huddled in a hallway, it sounded like a locomotive train was whistling right outside the door; the front door was moving around the jam, keeping the storm out. In hindsight, if I am ever faced with a Hurricane Warning for a bad storm, I am evacuating. I think you have lucked out, Dorian is headed more towards Jacksonville but the storm looks huge, so you will obviously get some of it. Remember to caulk and seal the bath tub, and fill it up. You will need water to run the toilet and wash. The afternoon Andrew passed through South Florida, it started to rain, so I took a shower in my bathing suit in the back yard. Take care, best wishes.

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GMa27

Do u believe I have been visiting family in Charleston the past 2 weeks! My grandkids just moved here 3 weeks ago! I am driving back to FL today. Hopefully they will be ok and storm continues east.

I lived thru Frances and Jeanne. Andrew was 100+ miles away from me. And have been thru every storm in FL since. Some we dodged but the stress is still there.

Andrew was horrible and changed hurricane awareness forever! 💕

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LovecuresCLL

Some doc should give her one very very slow ....low dose of Gazyva. If she doesn’t tolerate it, they can always stop the infusion. She might make it to 97 with that.

You could get a second opinion.

Try some green tea extract or green tea period. It is harmless and it just might help.

What does she want to do?

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to LovecuresCLL

Please don't give medical advice that isn't backed up with reliable research. I had no problems with Gazyva, but it can have significant side effects. And green tea extract is not harmless for everyone. It can cause dangerous liver toxicity."Ask your mother's doctor about....." would be the appropriate way to make suggestions.

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BaseballGardener

Thank you for taking the time to reach out. My mom does not communicate much about her condition. I had to explain to her what was happening, and why she was now visiting a cancer center. My mom is somewhat old fashioned, she does not enjoy interacting with doctors. I do know that she feels comfortable with me looking out for her, and she would take any advice I give her. So, the communication goes from her doctor to me and then to mom. I doubt I can get her to drink green tea; she likes black tea only, but I will give it a shot. We go to a hospital in Maryland, USA, which is actually the second opinion. Again, thanks for taking the time to reply, much appreciated.

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LovecuresCLL

I like a vitamin like D3 too. I think the concern of her child and the green tea extract plus the vitamin D may have a placebo effect. Just tell her “Mom this is really going to help you ....,I just know it.”

CLL should NOT cause a stroke per se. Easy bruising should not hurt brain unless she falls and hits her head. I would look at her blood pressure and see if it’s high and check for arrhythmia in her heart which can throw clots to the brain. I would have her doctor see if her carotid arteries are open and free of atherosclerotic plaques. They can listen with stethoscope to her neck on both sides. Check her cholesterol as well .

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to LovecuresCLL

Suggesting lying to a patient is not appropriate, nor is just adding supplements without input from that patient's doctor!

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BaseballGardener

I agree, her doctor's are given a list of everything she is taking (both scripts and supplements). Right now, she has a cardiologist, an oncologist, and a primary care physcian, and I make an effort to make sure the lab results are shared. Thanks for reaching out.

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BaseballGardener

Thanks for taking the time to share. My mom's health profile is a little complicated, I did not initially provide all details. She has a pace-maker, and her bp is regularly monitored, including home monitoring. Vitamin D-3 is part of her regimen, and I provide a list of what she is taking (scripts and vitamin supplements) at every doctor's visit. Her primary care physician suggested we try Vitamin K for the bruising, but we don't see any improvement. Her chemistry profiles are pretty normal, except there are elevated measurements for the liver enzymes (ALT, etc). Her cholesterol is normal, she did not respond well to taking small dosages of statins, though, and her cardiologist stopped that therapy. Again, thank you for taking the time to reach out. Thanks.

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Quarry

Treasure the great love and relationship you have with your mum. My only advice is don't let worries about CLL get in the way of that. CLL is a progressive disease, with the progression rate varying from individual to individual, often taking 10s of years to progress enough to require treatment. At the moment your mum's bloods are good - no treatment needed (even if she was young and strong!) - it is quite possible a 'bad' blood result will never come, so try not to let worrying about the 'if' take over. There is little sign of the 'if' at the moment (3 monthly testing is within the norm for W&W). Easier said than done I know!

Also, it is easy to link CLL with all other health issues - the truth is, we will still get our illnesses and frailties in parallel with CLL, not because of CLL.

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BaseballGardener

This was such good advice, thank you so much. I don't let the CLL get in the way of our lives. My mom just had her last visit at the end of July, so I always get a little stressed at the time of the appointment, and thank the Lord when we are given another 3 month pass. It is just something new in our lives, I think it stresses me more than my mom! My mom was born in July 1926, and Queen Elizabeth was born in April 1926, so whenever I see the Queen, I immediately think how nice it is to see these 2 ladies still getting on with life. Take care.

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Mimi4times

Mercy! Your mother is 93 ! Praise God! I am 68 and under W&W for my CLL. They will not do anything now because it can make me feel worse ; some treatments may not be effective and can really put older people at risk. I also have CML and on a chemo drug for that. I don’t qualify for a bone marrow implant because of my age. Even if my numbers for CLL became worse I feel I am not going to seek treatment. I don’t want to be weak and sick for what time I have left. My head is high and I feel pretty good.

Mimi in GA

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BaseballGardener

Thank you so much for sharing. I loved your honesty and being open with how you are thinking. Some of the responses I received did lend opinion to start with mild treatment, so I am sure that if you come to that bridge to cross, your oncologist would thoroughly discuss your options and the risks. I am 63 and have always been in good health (so far). I am apprehensive to offer you any advice, but I will say this: the best part of the day is the early morning, the quiet time, being able to watch the sun come up and go about your business. I think that is what I what I will miss most when the time comes, and I would ask a lot of myself just to see another sunrise. Let's stay in touch, thank you so much for reaching out.

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