Hi & Update

Joined: 12:09 AM - Jul 25, 2016

1:55 AM - Jun 13, 2018 #1

Hi everyone! I haven't posted in quite a while, but I check the board pretty regularly and so appreciate having it as a resource. Thought I'd post an update. In April, I had my 18 month follow up at the NIH including a bone marrow biopsy. I'm in the Cladribine + Rituxan trial there. Happy to report that I'm still in complete remission with no minimal residual disease. My blood counts were taking their sweet time to recover, but finally on an upward trajectory. 

Wishing you all the best! :)

- Anna
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Joined: 7:18 PM - Mar 27, 2014

7:38 PM - Jun 13, 2018 #2

Congrats, Anna. Thanks for sharing the good news.
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Joined: 12:12 AM - Jan 24, 2017

1:55 AM - Jun 21, 2018 #3

Hi Anna - 

Such great news - thanks for sharing it.  I hope your remission continues for a long time :)

Best, 
Helen
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Joined: 11:18 PM - Mar 15, 2009

8:45 PM - Jul 16, 2018 #4

congratulations
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Joined: 5:17 PM - Mar 30, 2003

9:33 PM - Jul 16, 2018 #5

Hi Anna,

I'm glad you're doing fine. I know waiting for counts to come up is an anxiety-trip, especially when someone else's are shooting up. I guess it takes longer for some, but not for others. I hope you stay in remission for decades. Maybe then they'll have a cure! -- Rob
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Cbs
Cbs

1:27 AM - Jul 20, 2018 #6

Anna I followed your journey and appreciated you sharing your experiences with your dx and treatments, I am so glad to hear you are still in remission!!!!
How is your energy level these days? Any residual effects? I still have alot of fatigue, try to exercise and keep moving!!
Take care , good to hear from you!! 😊
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Joined: 5:17 PM - Mar 30, 2003

3:31 AM - Jul 20, 2018 #7

CBS - whats the fatigue all about?
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Cbs
Cbs

10:10 PM - Jul 24, 2018 #8

Hey Rob,
I have bouts of fatigue, my energy level is way down before and after my dx. I have started back to work full-time which has helped and I try to walk most days. When I have a "really" good energy day where I am going like my "old" self the next day I have no energy. It really gets to me alot emotonally wise because I do not have the same energy that I used to. Furthermore, most of the HCLers on here seem to not have energy/fatigue issues????
Thanks for any input others have on this, I have been in remission since latter part of 2016.
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Joined: 5:17 PM - Mar 30, 2003

Tired? Feeling Down? yeah I've been tired.

2:01 AM - Jul 25, 2018 #9

It takes a while to spring back, but it happens. That being said, the things that cause fatigue can be age, stress (about being tired;why; what's wrong; never happened before; others seem fine). Give it time, get plenty of rest and if you feel up one day then down the next--go with it. That's my DX-ish stuff. Another thing I do is get into a good lounge chair with a pillow on my lap and laptop on that--and surf, write, play solitaire. Sounds exciting yes? Oh it is! but I'm 70. Sometimes I go ride a motorcycle, or eat out, or well--I'm only drinking a glass or two of wine on the weekends. I'll do this for the next three years and see if I stop getting precancerous polyps in my colon. Gee what a subject. Sure miss the bachelor / babe days--just a dream now. And don't forget to visit someone in their 90's. It'll make you feel younger?
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Joined: 7:18 PM - Mar 27, 2014

4:41 PM - Jul 25, 2018 #10

I have fatigue problems and (unrelated) arthritis. Busy days have to be balanced by rest days. If I didn't have to rest because of fatigue, I'd have to rest because of the arthritis. The HCL and non-HCL docs always say that it must be the other doc's problem. One of them did mention recently that sleep apnea is much more common than most people believe, and that a lot of people don't notice any clear symptoms, so I've naturally been wondering whether that might be a factor as well.

I also have a lower tolerance for hot weather than I did when I was younger. 30 years ago, a sunny day at 85 °F (30 °C) was a perfect summer day; now, I start thinking about heatstroke and looking for excuses to go somewhere that has air conditioning.
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Cbs
Cbs

1:23 AM - Jul 26, 2018 #11

Thx Rob/Waid,
I was thinkin it was just me! I am not glad that both of you have fatigue issues, but I seem to be handling it in the same manner as both of you....go with it and the fact you can be up and down and listen to ur body. My prob is I have too many things I want to do and try to keep up with my house, job, kids etc it gets to me emotionally that I can not perform physically as long stamina-wise like my old self. Thanks for the insight! Having some bloodwk done to check all my levels and a few other panels so we shall see! Keep ya posted😊
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Jimbo
Jimbo

8:49 PM - Jul 26, 2018 #12

Best wishes to you.   
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Joined: 12:09 AM - Jul 25, 2016

4:57 PM - Jul 27, 2018 #13

Thanks for the kind words, everyone! I also still struggle with fatigue. At my April follow up, they found that my iron levels were way down and hemoglobin was trending down. I've been taking iron daily for the most part since then, and that's definitely helped. It's still not great though - I notice I need a lot more sleep than my partner and tend to feel wiped out after particularly active days. 

When I exercise regularly, that does seem to help. At one point last year I also tried out a very low-carb diet and I felt like I had a lot more energy - but it was tough to keep up with that long term. Seems like it ebbs and flows and, like you all said, good to just listen to your body and try to keep healthy with diet and exercise :)
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Joined: 5:17 PM - Mar 30, 2003

Anna! Stay away from low carb

1:33 AM - Jul 28, 2018 #14

I'm an expert on that. I did low carb for 10 years. You won't believe the side effects, very bad. More than two weeks is not good. It caused me to have pleurisy and pericarditis. Not until I got off it did those things clear up. You need carbs. Good carbs.
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Joined: 7:18 PM - Mar 27, 2014

7:55 PM - Jul 28, 2018 #15

I think everyone's probably a little different in terms of what works best for them, but a bit of moderation is probably a good idea for most people – just "low carb" instead of "very low carb", for example. On the other hand, I've seen studies that say that, because people don't follow their chosen diets strictly, if you tell them to do "very low" (anything), then they'll probably actually do "somewhat low" in practice. So maybe we need to talk about extreme plans, just to get us to do something different.
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Joined: 12:09 AM - Jul 25, 2016

8:26 PM - Jul 28, 2018 #16

Rob, sorry to hear about those side effects! I do think everyone's different in what diet works for them. My take away from the couple months I spent doing very low carb (keto specifically) was that 1) I wasn't going to be able to keep it up strictly, and it can be unhealthy to do a high in fat diet if you slip up and eat more carbs than you're supposed to and 2) it's probably good to just eat less sugar and carbs generally but not do the extreme diet thing. I think your point about moderation makes a lot of sense, Waid.  
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