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CLL Support Association
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CLL... Just tired of it all..

So if our CLL will always be here and most are in W&W why even bother to continue running back and forth to the doctor? I guess I'm frustrated. I can't get the results of the fish panel. I had to have two iron infusion. I was told my CLL is bad but the treatment is worse so they want to wait until I'm worse, lol. So if I never found out I had it, I would still be tired but not bothered by all the labs and the wait and watch. I really am thinking about never going back to a doctor. I'm tired.

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My understanding of watch and wait is the longer you can go without treatment the better. Hang on in there but keep getting checked.

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You need to find doctors that work with you, not work you over. You should demand a copy of your FISH panel . The fatigue sucks, I totally understand. I get some Ritalin which helps...I only take it occasionally, when I am desperate because I don't care for it much but see if your doctor will give you something like that.

Having a doctor you are comfortable with will make all the difference. I saw my Hematologist today and left feeling pretty good...I see her again in 3 months.

Scott USA/Maine

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I did demand it twice no response. I suppose to go back in June. Not sure I will. Told him of all the places I hurt he said you want pain medicine... Nope..I have a high tolerance for pain. My throat on the side feels like someone is squeezing it when the nodes act up. I've told him about the night sweats he said I'm going thru the change...I had a hysterectomy in 1994.. So I feel knowing about the CLL was really nothing to know because I feel the doctor is not listening.

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You need a new doctor, period. My first hematologist appointment lasted 5 minutes..I got another, then a third who I am super happy with. And these whitecoats are taught anyone complaining of pain is just looking for pain pills....my wife had a tumor taken out of her head 18 +/- years ago and they treated her like she grew a tumor just to scam some pills. Totally gross. Get a new doctor you will be a lot better off even if it is a hassle finding a new doctor.

Scott

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Plus it is so much worse for women. Get a woman doctor. They listen way better usually than guy doctors...but not always . My primary care is a guy and he listens really good too. Or be ready to stand your ground, as in call the doctor and tell him you expect the results of your FISH in 10 minutes or less or he can talk to a lawyer....that part is easy for me my wife went to law skoool....but there is a better than 50/50 they will tell you not to come back...but hey, if you have to get to that point do you REALLY want to go back?

Scott

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I was once prescribed Ritalin (for depression; helped my energy & lifted me out of the depression but it eventually it reached a plateau & kind of gave me jitters, like a 3rd cup of coffee). Then I found Vyvanse, which I found perfect for me - after 30 years of chronic depression and the type of fatigue that accompanies it, I now get the lift I need to focus, be productive, feel fairly energetic, and keep life from always feeling uphill.

I know fatigue with CLL is different, usually deeper & at times flu-like, but so far, 6 yrs from Dx, I haven't really felt it. Maybe the Vyvanse is masking it or maybe I'm just lucky so far. But for sure I'm not stopping the Vyvanse which I've taken almost every day for last 10 years.

Maybe a switch would be worth a try?

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Ritalin is first generation, Adderral is second and the Vyvance is third generation...I really like the chemistry of Vyvance compared to the others but someone gave me one once and it kept me awake for like 36 hours....but not much for energy :))) I plan on seeing my doctor sometime this month or next and will ask him about it. I guess I don't really want something I take every day....I use the Ritalin more like a "Break Glass In Case Of Emergency" type thing....

Scott

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I hear you. From what I heard Vyvanse was very similar chemically with a different delivery system. Although it works for me from what I read on message boards I saw there was an incredibly varied mix of results from those who tried it. Sending positive energy your way for some postive energy any way you can get it.

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Do iron infusions help? I had to be given packed red blood cells regularly when I became severely anemic from CLL progression, before starting treatment. But my understanding was that additional iron would not have helped me. My marrow had no space to manufacture red blood cells regardless of iron available in body.

Good luck during this difficult period. I know what you mean about all the tests and labs. Hope you are seeing a CLL specialist.

kim

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Same for me...I am anemic and desperately wanted to hear infusions could put off treatment. Docs said nope...my bone marrow is crowded. Treatment starts next month.

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Transfusions of packed red blood cells will temporarily raise your Hgb and RBC count when you are seriously anemic from CLL. And in a way, you could put off starting treatment by that method. But what I learned from experience is that treatment (at least with Ibrutinib) is far preferable to the problems of chronic anemia and the transfusions (which can eventually cause iron overload if you have enough of them). Two bags of packed RBCs only raises your Hgb 20 points. So I was being raised from Hgb of 65 to 85 (or 6.5 to 8.5 in the US I believe) every 2 weeks. That's still very anemic. And the uptick is temporary.

Good luck with starting treatment next month, GM! What treatment will you be starting?

kim

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Doing FCR.

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I echo what others have said, time to get a second opinion, from a hematologist, in a large city hospital..

If you give your nearest city location, we might be able to suggest a few doctors,

I'm 20 years post diagnosis for CLL, saw my CLL doctor every 3 months, it never gets routine, but it becomes quite manageable... give yourself time to adjust.

While you are at it, get tested or VitD3, B12, folate... and bring your vaccinations up to date, and get both a Shingrix shot for shingles and a Prenar13, pneumonia vaccine, used on children... talk to your GP, about other tests he might preform...

~chris

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I went to Mayo Clinic and was warned NOT to get the shingles vaccine because it is a live virus. No live virus vaccines allowed. You will surely get sick.

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Shingrix is not a live vaccine.. its new.

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My CLL expert said too early to know about new Shringrix shot and did not recommend. Seems to be a huge controversy still.

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I just sent my doctor a message about Shingrex...I think I would rather take the chance of getting the vaccine than getting Shingles.

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Just a small point -I watched a podcast from this site with a panel of CLL specialists and one of them said NEVER get the shingles vaccine because it is live virus and will do more harm to CLL patients than good. He also indicated that more testing was required. Just FYI

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This new one is not live. But my docs still said no at this time.

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The old vaccine Zostavax.. is live.. NOT for CLL

Shingrix is a new non-live shingles vaccine, and the ACIP recommendations on use in immunocompromised patients is due shortly... as always run it by your doctor...

~chris

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Winnipeg , Manitoba , kmow any good CLL specialist ?

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Dr Johnston and his team at Manitoba CC also Dr. V.Banerji

umanitoba.ca/institutes/man...

umanitoba.ca/institutes/man...

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Thanks ,so should my dad continue to see a hematologist or just the CLL specialist ?

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That's up to him... the programme at CancerCare Manitoba, is very good... quite involved in research... etc.

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Sounds like you need a new doctor. And if you're just seeing a general hematologist, you MUST see a CLL SPECIALIST. My Hemo said I was Stage 0 "probably" mutated and we'd watch & wait. But with his help, I saw CLL specialists in Ohio, Boston and San Diego and learned I was Stage II, UNmutated and in need of urgent treatment or I'd be dead in 3 years. So now I'm in a clinical trial. You can't rely on the first generalist you meet.

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Agree with you absolutely. All my current hematologist does is take notes--though doing NOTHING when I constantly complain about full body sweats. (NOT just the "night sweats" associated with CLL). I had a total hysterectomy over ten years ago. These sweats are not related to that. It's debilitating. Plus the fatigue. My "generalist" is located in NYC, where I live, and I'm fed up with getting no help what so ever. Regarding the "sweats" she tells me there is "nothing to be done".

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I am only 4 months post diagnosis and am seeing a doctor at Dana Farber, but she is not a CLL specialist. I decided to stay with her because she is in a satellite location and I did not want to have to drive into Boston. While I am W&W and have been told I may never need diagnosis, I am thinking it may be worth the drive to be sure. Do you mind if I ask which specialist you saw in Boston?

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Are you in the US? If so just say HIPAA Law. Doctors are required to give you copies of any and all of your medical records. They can charge the cost of copying them, but they can't say no.

Every doctor is required to give you a copy of their office's way of dealing with HIPAA and have you sign that you got it. Most just stick the form in the middle of the stack of papers to be filled out and assume that patients will just sign it. That really irks me, so I put that form on top and tell the office that I will sign the form when they give me the required document.

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You sound like you're suffering and your doctor is not helping. Where in the world are you? US, UK or where. Can you get to see another haematologist? Good luck and best wishes. Jeff

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I am sorry to hear that you are having a rough time. It is hard to stay positive when the chips are down. Hope that your plight improves, your medical team are your first line of defence. If you feel that you are not getting the help that you need, don't ask - Demand. Very best wishes.

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The key word here is "team". No one doc should think he/she can handle this alone. My hemo sent me to 3 top CLL SPECIALISTS and consults all for consesus on every aspect of my diagnosis and treatment. If your doc isn't doing the same, get a new doc!!

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I agree you may need a different Dr. I go to a cll specialist at Duke thats outstanding. I get a printout of my labs within 1 hour and a copy on the internet within 1-2 days. I was told I needed treatment as soon as I was diagnosed but only 2 treatments brought on other complications so I guess it is best to wait as they say. Good luck.

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Hi Mamawolf, I am going through a rough patch with my current hematologist too, and also in w&w. I had a ‘hinky’ mri, which they never called me to notify me, but I seen the result online. Then when we ran a follow up CT to verify, which it did, instead of calling me in, they messaged me and said we would run another test in 3 months to see how much it was growing. I’d really like to know what “it”is, and was very apprehensive about speaking up and being my own advocate. My age and the era I was raised might have something to do with it, I am 60years old, and perhaps you are this era too? Just guessing. Anyway, I am feeling much better taking the reins, and have started the process of getting with a CLL specialist in DC. He is not local to me, but that does not matter, he will head up a team of doctors that are local to me, and we will discuss how often to see each other. We only get one ticket to this merry go round, and while occasional frustration is normal, constant irritation and depression is not. One of my replies when I asked on this forum hit home. Changing doctors is no different than changing a hair dresser or restaurant, you make an appointment with a new one, and stop going to the old one. You wouldn’t put up with a bad hair cut would you? Don’t put up with a bad doctor either.

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My friend, I understand your feeling, however life is worth the effort

Keep fighting, remember that science is advancing at incredible pace, it is very possible that in a few years or months they will discover a cure to get rid of CLL for good.

Just get your act together , kiss somebody you love

and keep walking......

best regards and good luck

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It sucks, huh. Sometimes it just doesn’t seem worth the effort. I understand that one really well. You’ll be in my prayers. Don’t give up just yet.

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I don't know where you live but I am seeing an oncologist at Weill Cornell in NYC. They have been fabulous! His name is Dr. Peter Martin

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Agree with others. You need a CLL specialist or hematologist/oncologist. Plus your insurance pays for those FISH tests; you have the right to get your copy. I get them all the time. Easy. Speak to someone in charge. As far as night sweats are concerned, I was told it’s not just normal sweats, but “change your sheets” kind of sweats. You will have to change you sleeping attire too. It’s thst bad. I do hope you get a new Dr who will listen to you. I also went to Mayo, just to be sure. They have a special CLL division. I’m a part of a trial and they are following me. Luckily my Ins covered most of it like a second opinion. One other thing Mayo told me was that they found that patients that we’re treated too soon; faired much worse than ones that waited. That the chemo weakened them so much that they lived shorter lives.

Most of us, if diagnosed over age 60 will outlive it or die of something else. But you still must take care of yourself and beware of infections. Have regular cancer screenings and NO LIVE VIRUS VACCINE Best of luck to you.

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Shingrix, the new shingles vaccine is NOT A LIVE VACCINE, but check with your doctor...first.

~chris

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All of us here understand the difficulties of Watch and Wait. It can be so demoralising. Don't give in. You are not alone. You've had some good advice on this forum - find a CLL specialist who will engage with you. As Cagiuliano said there are high hopes for a cure for us in the not too distant future. You need to stay well, stay informed and get the support that you need so that when that time comes you'll be ready to take advantage of it.

B

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Be better if they called it ‘Active Monitoring’ and not watch and wait/worry

Good luck and hang in there

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I know how you feel. I often think the same thing. If I had never known about this I would just think it was the way life was when you got to be a certain age! It is also something that is now always in your mind, sometimes in the back and sometimes in the front.

But if you do need treatment, you now have some choices since you have done some ground work.

When I first found out I didn't believe it. But I did suddenly get sick and needed treatment. Fortunately I am in a kind of remission now so I can sometimes forget I have it! Sometimes.

I hope you can have more and more times of forgetting about it!

Hang in there, so many people understand how you feel.

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I fully understand that W&W can be a "bitch". However, after 9 years of W&W checkups, my CLL got very aggressive, pretty quickly - like in less than 3 months. Without treatment then, I very likely would be dead now, or at least would have required a lot of hospital care.

I've had serious side-effects from one CLL drug (Imbruvica, but I'm only 1 of about 15% who got Afib). Otherwise I disagree strongly with your statement to the effect that "CLL treatment is worse than CLL". The new pills that are available now are proving to be extremely effective, and are painless. And, they're getting better every year!

So, try to hang-in-there, and keep your W&W appointments. Skip one, and you may be sorry. But, as many others here have said, you should probably find a new doctor, if you can.

Best of luck! (And, be thankful that you aren't going through this 50 years ago, when the harsh chemo treatments WERE worse than the CLL.)

Gary

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Mamawof, so sorry you are feeling discouraged. Hope that will lift for you soon. Lots of great advice here, but just wanted to say we've all been there, you're never alone, and your well-being matters very much. You matter. I know It's hard to fight for yourself sometimes when you're down, but you can do it. Just take that one next step. Make the call. Whatever it is. I'm glad you're in the world. Sending lots of love and prayers your way! xo

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30 years ago a close friend of mine had Leukemia and was blasted with Chemo... after less than 2 years of fighting it he passed away too weak to go on.

There was a chance he would be rid of it, but he died too young instead.

now, W&W we get 10 years + before we start treatment, and thank god its better now than 30 years ago.

What would you prefer?

I much prefer getting as many good years out of my life as possible.

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Wow, I've never seen so many replies! I'll try to keep mine brief.

I too was diagnosed years ago and basically told that no treatment was necessary ( i.e WBC was 60.000) and if I'm not tired, loosing weight and all my RBC #'s looked good, then just get on with life and have everything checked at 6 months. ( I had deletions 11,13 but no 17p). However. the Dr (at Mass General) did say that if I had a sudden weight loss(mine was 25 lbs)and there was ever a "doubling in my WBCs then it was time to consider treatment. Fast forward, during a 6 month check-up last August, they ski rocked to mid 300,000.

I was lucky to get into MD Anderson, in Houston and began a clinical trial using Ibrutinib and Venentaclax. I'm happy to say ,all my number now look good (i.e. my WBCs are 4,000 from a high of 414000) .

Definitely need to find ( even you have to travel a ways lie I do) a true CLL specialist

Good Lock!

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