Two complete opposite opinions

I have been seeing two different CLL people because I couldn't decide between the two, overall they both have agreed for the past ~18 months Watch & Wait. Well things have progressed a lot this past year for me. The fatigue has gotten really bad, many drs. have commented on the glands in my neck being really swollen (I have no spleen, it was removed 22 years ago), I have had a really hard time recovering when I get sick or when I get a cut or infection, I am getting night sweats, and I just feel sick often. I saw Dr. #1 who is farther away & posted about him wanting to do treatment in the form of a trial- got great advice- he'd want me to be down there basically every 2 weeks which would be very hard for me. So he did give me a choice to see Dr. #2 and so I did today, he was VERY egotistical today (not usually this bad) and said he didn't really know that the fatigued was from the CLL and that he ddi NOT recommend Chemo pretty much because of my age (40) and because he didn't feel my glands were that bad. I was so shocked. I don't know what to do.

I know my #'s aren't nearly as high as many others who are being treated (WBC 34.1; Platelet 523;Abs Lymphs26.6; The Abs. Lymphs has NOT doubled in the year, it's gone up only 50%) but the way I feel is why Dr. #1 was thinking it was time for treatment but Dr. #2 basically blew off how I felt.

I've tried exercising a little more to help with energy, that hasn't helped at all, I'm taking all these vitamins, doing everything everyone suggests etc.

What now??? THANK YOU!

14 Replies

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  • I think we should remember that the main aim is to treat the whole patient and not the disease.

    If you feel that the symptoms you are experiencing are such that you believe treatment is necessary then you should be part of the decision in respect of this.

    I would discuss the differing opinions with both clinicians and ask why they believe the recommend course of action was made. Is one basing their treatment plan on what you are experiencing and the other simply looking at the physical symptoms?

    From what you say about your bloods they don't seem too bad ( you can compare with mine in a previous post) but it should be about how you feel and this is not just the physical symptoms but the psychological as well. There is a danger of putting everything down to cll of course but only you know how you feel.

    You might also remember that the treatment can sometimes be worse than the symptoms so all this should be taken into account.

    Have you had a BMB? Or a genome test to ascertain how you would react to treatment? Have you had a prognosis as to how your cll will develop?

    All these things you should take into account.

    I am in for treatment in the next few weeks but I am fully aware of the whole picture and would highly recommend you get as much info as possible about your case before deciding what to do.

    We all feel down after experiencing the kind of symptoms you describe but getting all the facts before you make a decision is important.

    Wish you well with your decision and for the future take control of the situation you will feel so much better!

  • As I recall you were to see doctors at Moore's and Stanford? Has either doctor suggested treatment with something like ibrutinib, 'off label'?

    Doctors at research centers tend to be clinical trial oriented, perhaps a third opinion is in order? A clinical trial may not be a good 'fit' for you...

    I think you need to be pro active and pursuit all avenues...

  • Yes, I saw Moore's and Stanford. I was just so shocked yesterday when he said I didn't qualify...No one suggested "off label" and yes, I was thinking of a 3rd opinion, I just don't know where to go...

    I don't know what any of this is so I am assuming the answer is no I've never had this done:

    "Have you had a BMB? Or a genome test to ascertain how you would react to treatment? Have you had a prognosis as to how your cll will develop"

    Any suggestions on who to go to for a 3rd opinion? More suggestions on what to do? Thanks!

  • Fatigue is a well recognized reason to treat CLL. Painful very massive nodes ( >10cm) is sometimes another. A high count is usually not. At 40 I would avoid chemo and in theUK that probably means a clinical trial when you need therapy. I would stop the vitamins unless you are deficient, and assuming your thyroid is OK and you are not depressed, I would ask your doctors about modafinil to treat the fatigue. BTW, radically different opinions are laughably common among CLL experts.

  • Bkoffman

    Interesting comment "At 40 I wouldn't recommend chemo"

    Perhaps you could elaborate?

  • I would avoid FCR for all young people due to their long term risk of secondary cancers. They should live a lot longer than a patient in their 70s so their risk is higher.

  • The vitamins aren't for CLL :) Sorry, it's just an overall way to try to be healthy...Never heard of modafnil, which dr. do I ask? The one who thinks the Fatigue may not have anything to do with the CLL or the one who wants to put me on a trial? I can't believe 2 Drs. giving polar opposite opinions is common, that's awful :(

    Anyway, I need sleep (it's almost 1am here) but the other ? is- I notice this month on the blood work the platelets dropped significantly- what does that mean anything? My platelets haven't been this low in over 20 years!

  • Unless deficient, no need for Vitamins for anything in my opinion and the medical literature. However, check D3 level. No standard treatments in CLL so different opinions are common. Modafanil is mostly used for people with trouble staying awake during their waking hours such as found in shift workers or people with sleep apnea. Stimulant ADHD drugs may also help.

  • I was told when I broke my foot a few years ago to take Vitamin D with Calcium that's why I take it....

    Your response interests me because I use a sleep apnea machine and I have told numerous Drs. that I am STILL having trouble staying awake at work, even though I had a GREAT class this year (3rd grade teacher). The last 2-3 years it's been getting worse and worse & no one EVERY recommended ANYTHING and it's quite embarrassing to have a 7-8 year old say "Miss Decker, you're falling asleep" and that's AFTER you use your machine religiously and get 8-9 hours sleep!

  • You should have a repeat sleep study with the CPAP machine on to see if the settings and fit are correct. If they are are all OK, then modafinil or armodafinil would be indicated for excessive day time sleepiness (EDS). There are other causes of EDS. Remember that sleepiness is different than fatigue. Fatigue is relieved with rest or sleep, but sleepiness is only relieved by sleeping.

  • I hear you rlyndecker, feel the same frustration. Me, I just continue on and put up with some of the most stupid things people say. It's your life and your disease, deal with it in your way and leave the rest. Me, I'm at peace with it all, but others confuse peace with having lost hope...they're so wrong. Still having some great times despite the extreme fatigue, the pains and the symptoms of the day. I don't battle CLL, I just live with it.

  • What would YOU suggest for a 40 y/o who has extreme fatigue...My glands in my neck hurt, my dentist has commented on them being enlarged for a couple of years, Dr. in San Diego said 5 CM in a year increase (for a total of about 5 cm large) Stanford said "not that big" but didn't give me an exact measurement.

    My issue is I don't know what is part of the CLL and what isn't. I wake up wet on my chest, is that CLL? It's not hormones, had that checked.

    I don't even know what to tell the Drs. or what Drs. to tell- here are the things I am confused on recently that I told my primary Dr. that she doesn't know what to do about: I get migraines the last few years (now I am on medication for this through a neurologist), is that CLL? This past year I've been getting major stomach aches/sore throats and it's harder to swallow, is that CLL? I get side cramps basically a little lower than where my Spleen used to be, (that was removed 20+ years ago) CLL? I get scratched or cut and it takes forever to heal, I get an infection it takes 2 rounds minimum or antibiotics to get rid of it, CLL?

    My regular Dr. seems to think most of these things are because I have no immune system (No gallbladder, no spleen, no tonsils) and I am a primary school teacher) so I am picking up every little bug the students have despite having a VERY clean class this year (as in they constantly are cleaning their desks with Clorex Wipes and washing their hands)

    Basically I still don't know where to go from here, do I just randomly choose an Oncologist and get a 3rd opinion? Do I find one that specifically has a clinical trial? What about my other issues? I feel like I need Dr. House from the TV show "House"

    Thank you!

  • I'm afraid I can't help you with your decisions, but I do understand about the 'is that caused by CLL?' question because it is one I keep asking myself. The waking up with damp nightclothes, particularly as you mention in the chest area is something I have - but I just thank my lucky stars it didn't wake me up in the night.

    You are more at risk of infections with a class full of students, no matter how clean they may be.

    It is quite hard to be given choices when you have no idea which is best, treatment or no treatment, and without detailed medical training I don't see how you can make a valid choice. Sometimes it is just that the Drs don't know either, of course.

    I hope there is someone on this forum who can give you good advice. Good luck!

  • Maybe you need to change doctors, you need one who listens to how you are feeling and doesn't dismiss your concerns out of hand. After all you are the one who knows exactly how you felt before the CLL kicked in and how you are feeling now living with this disease. I do hope all goes well for you.

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