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CLL Support Association
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CLL confused

Hi everyone, I need some help. My husband who is now 82 was diagnosed 8 yrs ago and has been on watch and wait. He now needs chemo and will be offered chlorambucil within the next 2 weeks. We have been given all the paperwork and it is a bit frightening. He is worried about side effects given his age, as at the moment he is feeling well and can do most everyday things. Our worry is will we cope alone at home, and will this make him feel ill and fragile, or should we see out time out and refuse treatment. Is there anyone out there around the same age to has faced similar. We are reasonably tough cookies, but the past 8 years of 3 monthly hospital visits has worn us down a little before we start. Thanks for listening.

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I'm nearly 70, Dx In 2014 with concern about dropping Hgm now at 7.9, trisonomy 12, WBC 26K, neutrophils 0.8. Hematologist on fence about treatment with bendamustine + retuxan, which seems to be standard for older folks. Told him I want second opinion (at Duke) which he agreed to. Suggest you seek second opinion from CLL specialist before starting treatment.

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Hg 7,9 is an alert to hurry up to start doing something, preferable Chemoimmun FCR if you are fit and no other comorbidities or BR.

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Do you have a reference on the Hg count? Other potential causes have been ruled out but Hematologist wants to recheck to see if there is any blood loss via intestines. First test did not show any blood. I do have some swollen lymph nodes, but spleen and liver are ok.

My only symptoms are fatigue/shortness of breath. Although I recently contracted a staph infection following removal of basil cell patch on my back. Antibiotics cleared that up after two weeks.

Scheduled to have a round of blood tests in three weeks and again in six weeks. In meantime I'll seek second opinion.

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Normal for male is 14 - 18.

Therefore you must feel exhausted when walking or working. My Hg was down to 5,3 and I did not know, in those days, what caused my problems. Later I got 13 transfusions during my FCR journey until after 2 months Hg started to rise again, after second cycle. I was always afraid when I touched the bottom line of about 8 and received infusions.

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the symptoms are already there. Therefore I suggest to have your blood tested asap and get some erythrocyte concentrate in the meantime to start treatment. I am not a doctor but a patient experienced the same.

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Heyse

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Hey Seoul, appreciate your input. Had blood test done last Friday (2 days ago), including CBC w diff, CMP, Manual Diff Panel and Morphology. Same tests done three weeks ago. Next tests scheduled in three weeks. Aside from the Hg count what else do these tests would indicate urgency for treatment?

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They always want to rule out AIHA, but most of the cases are negative and red blood cell dropping is cll related. As the red cell will continue to drop, seems better the check it in close rang. I always worried, when Hg dropped below 8 and I was in constant care in those days. Clinic always made available transfusion to boost up by 1,5 Hg.

Take care....

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International CLL Working Group guidelines for starting treatment include haemoglobin dropping below 10, though an auto-immune complication of CLL in which the body attacks red blood cells (AIHA) first needs to be ruled out, as treatment is different.

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What tests are done to determine AIHA?

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It's the Direct Antiglobulin Test (DAT) - which checks for antibodies attached to your red blood cells marking them for destruction by your immune system:

emedicine.medscape.com/arti...

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Neil, thank you for your quick reply. DAT done on February 2, 2018 was negative and IgG in normal range (955). I'm very familiar with autoimmune disease as I was dx with MS in 1980, which has been dormant since 1985 with minimal residual affects from exacerbations. Would a bone marrow biopsy shed light on cause of anemia?

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Talk to your specialist about whether a bone marrow biopsy is required, but given your DAT test was negative, it is most likely the impact of your CLL.

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What reason is the doctor giving for starting chemo?

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white blood count thro the roof after 8 years watch and wait and now becoming aneamic

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I had negativ experience with Chlorambucil monotherapy.After 4 moths )2016y.) alleviting lymphadenopathy and invreased LDH (about 800).Two moths without therapy I received Rituximab+ Chlorambucil for 6 months therapy and 6 months only Chlorambucil.Is it improve.

Greeting!

Olga

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Sorry,my mystake.BIG lymphadenopathy after monoth.Chl.

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Hi Pablo, I was 71 when it was recommended that treatment should start, due to a rapid loss of weight, though my blood results weren't bad. I was given R&B and told that I'd sail through it without any problems. I did not. I had 6 months of problems and ended up in hospital twice. Even since Chemo finished 7 months ago, I got a Sepsis infection a month ago, due to low Neutrophils. My wife and I did cope at home very well, as we had the back up of a 24 hour help line and the A&E dept. of our hospital. I am very well now and back to my usual self, but take reasonable precautions to keep away from possible infection sources. Personally I consider it worth all the problems throughout treatment, as I am generally in much better health now than March 2017 and getting on with life, which was on hold most of last year. Your consultant should explain why they wish to start treatment and, as mine did, allow you to make up your own mind regarding when to start treatment once you have all the facts. Many consultants think they know what is best for you, but I prefer to make final decisions myself regarding when and how I am treated. The very best of luck whatever you decide and keep in touch on this site, as the support by the members when I had treatment was just brilliant.

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Thank you Eric for your time. My husband at present is feeling very well and we are leading a good life hence the worry about starting a treatment that may make him feel unwell. There is a saying about quality not quantity. We need more info I think directly from the healthcare team which we should meet within the next fortnight. Watch this space and thanks again.

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Hello Pablo, I understand your concern about your husband starting treatment, we all feel the same no matter what age we are.

However, your husband's age does mean that special care is needed and I'm sure your husband's consultant and his team will have taken his age and general health into account when deciding whether to start treatment and what treatment to give.

The usual prognostic markers and achieving disease negativity are less important in these circumstances than finding a tolerable and effective treatment which will reduce his disease and improve his quality of life. Your Dr's main objective should be to keep toxicity to a minimum and do no harm.

Chlorambucil is an old, well used treatment that is easy to start, adjust doses and stop if necessary. Many patients, including the elderly, cope very well and report little side effects but lots of benefit.

I'm sure your Dr will be following your husband up with great care and be on the look out for any side effects. However, please make sure you don't hesitate to get in touch with the team if you are at all worried.

I'm sending my best wishes that it all goes well.

Here's a link so that you know what to look out for.

chemocare.com/chemotherapy/...

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thank you so much for the above information. Yes I do know quite a bit about the drug they are going to use on my husband and the side effects. Conflicting views as always, i.e. take the medicine feel unwell and get it done, or leave it all alone, at 82 and still feeling well, enjoy whats left!!!!! Thank you for your time and kind reply

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Please let your Dr know how you are both feeling about this possible treatment and have a frank discussion about all the possibilities.

Best wishes

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I know it is a scary time when you first start a treatment, but trust in you doctor and believe in the treatment being given. Take each day as it comes and if things do not seem right seek medical advice quickly. I am sure you will both be fine. Keep supporting each other, and do keep fighting this illness. Good luck. Pat

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Am 81 & regret receiving rituxan - too much, too fast.

Although my #'s are better, feel worse. Older pts are more susceptible to side effects. Have comorbidities. Should have continued watch & wait. Second opinion good idea.

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Thank you I hope you will be feeling stronger soon

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I'm a volunteer for the Leukemia and Lymphoma Society. It is the largest Organization in the world dedicated to Blood Cancers in the world. I was diagnosed with CLL almost 8 years ago. I'm now 70 and have been on watch and wait fo all that time. My disease is progressing similar to your but have not been treated yet. Each person with CLL progress differently. I think you should get some answers anymore treatment. It won't take long to get the answers so you end up with the best treatment for you. The best way is to contact L & L is on line at lls.org

They have information specialist who are there to answer your specific questions. Use the patient menu rather than to provider and you see a host of video, books, support groups near you, and can contact the iformation specialists online, on phone, or chat online. You will be surprise by the help and services they provide as to financing treatments, trials and information on the latest trials. I'm trying to get you started with them Beaune I'm not a,Dr. but they have them both in oncology and hematology. Please contact them immediately. Reach them Monday thro Saturday I believe till 8PM. I 've direct others here and they are more than satisfied with the results they get. Hope I've helped. One more thing they can also explain your gentic testing and what it means for you.

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Hi aoakes,

The Leukaemia and Lymphoma Society are a very good organisation and offer the excellent services you mention but please be aware that the poster, Pablo, in common with a significant number of our members, is from the U.K. and therefore geographically outside of the services and support groups offered by the Society.

Regards,

Newdawn

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In Canada we have the LLSC, which is the Canadian arm of the U.S., LLS organization, however it has some autonomy...Here is a list of resources...

llscanada.org/national-and-...

~chris

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You are partly correct but all online, telephone, videos and stories are available on line arose the world. The information specialists are available for on line chat and by telephone. I've been watching your support group and they are online an provide limited info and it's like the blind leading the blind. I see very little evidence of anyone given answers from professionals.

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Aoakes, we are very well acquainted with the excellent work done to mainly support people across America and Canada by the Leukaemia & Lymphoma Society. We signpost our members to their information and videos from all corners of the globe.

However, your offer to Pablo was not country or healthcare system specific and offers of support groups in the States is hardly useful to someone in the UK. Hence my response.

Your reply is both insulting and discourteous and I’d be surprised if the LLS would support your opinion or comments of this highly successful and well regarded online community.

This is a community for people suffering with and affected by CLL in which people are signposted to the appropriate medical expertise. It does not purport to be a medical resource and such advice should be given by the patient’s medical team. You appear to misunderstand the remit of this very valuable online support forum with its international membership.

Within our membership we have professionals of every discipline and are the online arm of the respected UK CLLSA with access to medical expertise of the highest calibre. However, no individual member on here gives individual advice intended to replace that of the patient’s medical team. We are primarily for support, advice, signposting, sharing of new treatments and medical advances and friendship.

Your comment, ‘the blind leading the blind’ is offensive and discourteous in the extreme.

Newdawn

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Very well put response , we are here as co-suffers looking for support , encouragement ( which aoakes01 you are definitely not ), in-site and friendship.

james

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that may be true about us not all being specialists and you have a right to your opinion just as the rest of us but we all know that what`s said here is to be accepted along with whatever professional guidance we get elsewhere. Here we find emotional and moral support along with personal experiences mostly which is just as important as to which treatment we choose. Yes choose because we are all responsible individually for the decisions we make. On my medical record it says I refused medical treatment. We are allowed to dispute anything put in our medical record and giving the reason why. Well, I told them I`ve been getting medical treatment since I was a baby and if anytime in my life I decided I didn`t want a certain drug or treatment plan I had the right to refuse it-that doesn`t make me refuse ALL medical treatment. Thank goodness we still have "rights".

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Aoakes - I have been a volunteer with LLS for years in Southern California. What type of volunteer work do you do and which chapter are you working with? We managed to get a grant to create patient information bags for doctors to handout to the newly diagnosed. Lots of one to one connect, fundraising, and event work as well. It is very rewarding to connect with local patients directly and to be able to direct those in the US to the best resources for them. Of course some services reach outside of the US, as well, but many countries have their own support associations which are most familiar with local resources.

Looking forward to hearing more about your work!

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Patient advocacy from the Buffalo chapter covering Syracuse. Rochester and Buffalo areas. I'm in Syracuse. Just trying to help out so persons with CLL such as myself are given the info so they can stop getting poor advice and find real answers particularly when it's obvious they need more and better info from professionals.

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Aoakes, Admin will be contacting you privately about your inappropriate and ill-informed comments and your disrespect of the calibre and credibility of our admins and volunteers. If you took the time to read our guidelines, you would appreciate that the purpose of our community, is "to provide a safe and friendly environment where users can share information and offer mutual support" - cllsupport.org.uk/cll-suppo...

Despite Newdawn's reply to you above, you still haven't appreciated that this is an international forum which has a large proportion of its membership with different treatment options available to it than those in the USA.

Neil

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Hi Pablo -- I was diagnosed with cll 8 years ago and the first six years were w&w. My numbers changed dramatically two years ago. I did not feel bad but my oncologist felt it was time to treat. I have been on Imbruvica for the last two years. My numbers are now normal and I feel great except for a few minor side issues which do not bother me to any degree, just annoying. I just turned 86 and I feel no ill effects. I jog spend tree days a week at the gym weight lifting and other exercises. I still jog everyday, so for 6 days a week I work hard at staying fit. I recommend this to everyone. I try not to let cll ruin my everydays. Good luck to you. ellis

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Hi Ellis, lovely story thanks for your time, keep well.

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Hi Pablo,

If you or your husband are in need of advice or support during this period, here is a link of excellent U.K. cancer support services including Maggies and Macmillan Care. They are excellent organisations who can support the patient and carer. There’s no need for you to feel ‘alone at home’. Please reach out to them and there may even be a support centre near to you. Maggies have centres attached to many hospitals and offer a wonderfully supportive service.

maggiescentres.org/cancerli...

Wishing you well for the treatment and please keep us informed of progress.

Warm best wishes,

Newdawn

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Thank you so much for the above, will look into it all.

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I can vouch for Maggies personally. I’ve only been to the one attached to The Christie but the whole feeling of the place was great. They gave me a cup of tea and cake and left me to sit and relax fir a while before chatting about what they could offer and what courses/ session they I run. Not been to any of the sessions but it great place to sit and relax if you have a couple of appointments in a day with a big gap between like I sometimes do. rob

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Thank you for your comment/help. I have looked into Maggies as it sounds just the place. Unfortunately we don't have one down here in deepest Kent, but who knows, sometime!!

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You’re welcome, but really it was Newdawn that suggested it first.

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Hi Pablo, this is my two cents for what its worth. I can`t imagine giving FCR to someone his age. I myself am now 60 and had FCR when I was 55 and I believe its was the rituxan that was hard to take for me. But also there are two other drugs involved in FCR. I`m on Bendamustine only now and responding well after only 2 months. It is a little less mild than chlorambusil but not bad at all. I`m surprised they don`t go right to a BTK inhibitor first, unless they aren`t available. But my body just couldn`t take those regimens. If he has a high CD20 then maybe need monoclonal antibody but mine was practically nil that my ONC agreed with me no Rituxan though they normally put it with Bendamustine. So far after 3-4 days I`m back to my schedule but I must rest more because it does cause fatigue off and on.

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Thank you greygirl, I am fairly new to all the technical side of these drugs and have to confess I really don't understand half of the above. The people of this site seem to be so far ahead of me in knowing this illness, I have a lot to learn and not a lot of time to do it. Thank you all for trying to help.

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If you are ready to start up the learning curve you may want to review the educational links provided to Gildford last week:

healthunlocked.com/cllsuppo...

There are easy introductions, video explanations and deep expert discussions, you can choose the media and learning rate. It is like learning a new language and takes time to get comfortable, so take time and immerse yourself as much and as fast as you wish.

Len

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