Do I trust that my onc will choose the best treatment for me, ask for a list of alternatives to research, or resist treatment altogether?

My platelet counts have been dropping. Recently 118. My dr says 100 is the number that indicates treatment. He anticipates late summer or early fall. The regimen he indicated would be weekly infusions for six months. He then added that I would then be "good" for years. I believe he indicated that my white blood cells are crowding out the red blood cells. My spleen is slightly enlarged. I do bruise very easily. He didn't mention specific protocols by name. It has been 8 years since diagnosis, so I guess I've done well so far with this whole W&W thing, but this new phase is pretty scary. I hate the thought of putting poisons in my body and what might result from that. I'm now 70 and in very good health otherwise. Rarely sick from colds or flu. My heart was pronounced strong as result of stress echo cardio gram on Monday. Now waiting for results from ultrasound of carotids and a bruit in my abdomen. My husband is in mild to moderate stages of early onset Alzheimer's so staying healthy to care for him is very important. I recently retired from teaching after 48 years; I had hoped to make the landmark number 50 but I was becoming fearful of exposure to germs in my elementary classroom. The fatigue made it difficult to do much more than teach and my husband really needed me at home. I worry that treatment will result in a cascade of side effects and eventual loss of whatever immunity I still posess. And then the scare of secondary cancers to deal with too. Sooooo...do I just trust that my doctor is really smart and knows just which treatment I need? He is a hematologist and treats lots of CLL patients. I've tried to learn here and other websites, but I understand so little of what I read. Some friends say let the doctor do his job, but I know he calls it a "practice" after all! My friends mean well, but I trust the opinions of you who are so knowledgeable and so graciously share and encourage others. I look forward to reading your thoughts. ( sorry I originally posted this as a comment when I was reading another's question. I apologize for the redundancy. )

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  • I think it is generally advised to get a second opinion, prior to treatment. Perhaps with a doctor at a major research hospital, that run clinical trials.

    A platelet count of 100 is the point when pretreatment discussions should begin.

    It would help to know what treatments your doctor had recommended for you as well.

    Treatments are scary initially, I know I just went through 11 months of then, but after the first few rounds you will wonder what all the fuss was about...

    Ultimately, if treatment is required it is required, waiting too long will result is serious complications and resisting treatment altogether will result in death.

    ~chris

  • It sounds like health-wise, you are in a good position to respond well to chemotherapy and your doctor may well be taking into account your carer responsibilities in recommending when to start treatment, reasoning that you will respond better now than later and hence be better able to continue caring for your husband. (See Chris's last sentence.) If you could arrange a second opinion as Chris mentioned, then you may well get a recommendation to stay in watch and wait longer. I'd ask both your doctor and the doctor you see for a second opinion to explain their reasoning behind their recommendations - then make your choice.

    CLL manifests itself very differently in each individual, which is why it pays to get the opinion of a haematologist with wide experience with CLL. (I have similar platelet levels to you which are also gradually falling, but while they've bounced around between 100 and 150 in the last year, I don't bruise easily. Like you, I have family responsibilities and I'm not looking forward to being in the situation you're now in. Your thoughts and experiences could well be helping me later!)

    Neil

  • Also be sure to look at trends in blood results. For example, my platelets dropped steadily to 112 and then shot up again to 150 and then 186 six months later - with no apparent explanation. They still hold out despite a steadily rising lymphocyte count.

    May you retain your clear and wise head while listening to the advice and making your decision. Best wishes.

  • Ditto to Chris suggestion. See a CLL expert for a second opinion soon.

    If you tell us your location we can suggest some names of our favorites.

    If you like your current doctor there is no reason to change, and seeking an expert to aid both of you is not an insult to him/her. Many of us consult the CLL experts only once per year until treatment is needed and see a local GP or Hem/Onc every 2-3 months. CLL is strange and has many twists and turns in progression and response to treatment, so having a team that includes a CLL research expert, and a local doctor that can diagnose all the secondary complications - symptoms, bacterial infections, etc is important.

  • WE have a similar dilemna, I am about the same age and am coming to that stage where treatment is being talked about after eight years but only diagnosed six years. After forty five years of stress I thought with my diagnosis I would retire and enjoy a few years while I can but that was not to be as my wife became ill and, like you, I am now her carer having to attend to the usual chores. I have no symptoms and enjoy, touch wood, good health. My white count is around two hundred and platelets one hundred, the area when they start to treat, my appointment with my haematologist is next week at which time I will have to decide. However if treatment is suggested I will take a second opinion on when, where and what. There is a lot going on out there in the development of new drugs and sense suggests to wait if you can but not at the expense of one's health as any deterioration will cause more problems with treatment when it eventually comes, and come it will. They seem to draw the line at sixty five as a point when they consider the downside of the standard treatment (FCR) and in some cases offer alternatives with less severe side effects and of course these side effects will depend on many things in particular how fit you are. None of us want Chemopherapy but we need it to stay alive and you and I have more than self interest to consider, so my advice is take the second opinion, take their advice, there is good reason for the limits they set, but ask about trials, at the moment I am being offered Ofatumumab in combination with Bendamustine in a trial as opposed to standard treatment due to my age, maybe Ibrutinib would be a better choice but there are no trials at present in my area. I will also be looking at the possibility of location, a smaller hospital where I may be less likely to pick up infections. You sound a bit like me, you want to cover all angles but I have come to realise that this CLL is multifacetted and there are no certainties.

  • I agree that if you're currently under the care of a haematologist, it's wise to seek an opinion from a CLL specialist. I had a long discussion with my specialist at the point treatment was considered necessary, as I was feeling perfectly well, with no 'B' symptoms other than some moderately enlarged lymph nodes. In the end, knowing that he was one of the leading UK specialists, it was a no-brainer for me: I trusted his judgement and I'm happy that it was the right decision.

    As Chris mentioned, the prospect of treatment is daunting, because it's the unknown, and you can't be sure how you will react. However, if you're receiving advice from someone you know you can trust, then delaying is unlikely to help and may make things worse when the need for treatment ultimately becomes undoubted.

  • Thank you all for your encouragement and suggestions. I am not so afraid of treatment now. Hopefully medicare and my insurance will cover a second opinion when the time comes.

  • Hi as everyone has said please get a second opinion from a CLL specialist. Also treatment effects different people in different ways, some sail through others have a terrible time. There is no way of knowing before hand. Good luck.

  • I assume you are in the US. If you haven't gotten a second opinion yet, if you post your general location those of us in the US can point out good specialists in your area if you need help. Medicare seems a bit unpredictable these days as far as who will take it, but you should be able to to call the financial office of the person you want to see. Sometimes a second opinion is referred to as a one time consult, but most insurance plans guarantee you the right to have someone else look at your case.

  • Thank you for your reply. I see my onc in July. So will know then if still W&W. I am in the Northwest...Yakima, which is in eastern Washington.

  • I am not familiar with ease of travel in your area. It appears that the nearest specialists would be Drs. Maloney and Pagel in Seattle or Dr. Sharman in Eugene, Oregon. They would all be familiar with clinical trials available, in addition to any of the standard treatments.

    Pat

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