Living and dying in 3/4 time.

[DUKELAXDAD]

I live in Durham, NC, USA.CLL Stage 1. W&W Joint pain. Fatigue. Treated at Duke Cancer Institute. First diagnosed 2-6-18. I have started Yoga for joint pain, after three session I feel better. Given up sugar for night sweats. No more night sweats. Minimal alcohol. I have told family and close friends. I retired earlier than planned. See oncologist every three months. Life goes on.

[Ernest2]

Hello Dukeelaxdad, and wellcome to HU.

Silly question on the joint pain - have you lost weight and strength so far on your CLL journey, and which joints are giving the pain ?

You seem to be doing all the right stuff.

Hope you have read Paula's "Things we can do . . . "

healthunlocked.com/cllsuppo...

Best wishes,

Ernest

[DUKELAXDAD in reply to Ernest2]

I have not lost any weight, and I'm fat! I have started doing Yoga. it's stretching for seniors, over in Chapel Hill. I have been about six times not, once a week. I feel better. my hips feel better and I really like it. Nothing really strenuous. If it's an exercise I don't want to do the instructor gives me and alternative to do instead. Good luck to you.

[plan4change]

Hello DUKELAXDAD,

I was two day behind you (2/8/18) at Duke. I too swing by quarterly from N Durham. Strength and best wishes.

[DUKELAXDAD in reply to plan4change]

I saw my doctor 1/31/19. My numbers are all good so I have moved to seeing the doctor every six month now. I am feeling pretty good. I hope you are doing well also.

[DUKELAXDAD in reply to plan4change]

I hope you saw my post regarding the third Pfizer shot. I have antibodies now.

[F550]

I am in Chapel Hill (NC). See my post below under F550. I saw and liked a Duke doctor, but it is more convenient for me to see someone at UNC--Hillsborough. Good luck.

Mike

[DUKELAXDAD in reply to F550]

Some of my friends are being seen at UNC. They also have great doctors.

good luck.

[cujoe]

About 12 1/2 years ahead of you and plan4change at Duke Cancer Center. I was 59 years old when diagnosed and am now 71+. I have a good profile and have so far not needed treatment; i.e., IGH mutated, 13q4.3 deletion (double) & no others,& 5% CD38 (at diagnosis). Other than numerous enlarged lymph nodes, no symptoms ever. Migrated to 95% vegan diet over last 8 years. WBC & ALC have dropped over that period and lymph nodes have dissipated. At last labs in December, WBC was in normal range for 1st time in 12 years, ALC is at a new post-diagnostic low of 6.1, and all but one palpable lymph nodes are gone. My only major concern with CLL is dropping immunoglobulins.

Five years ago I had surgery for my second cancer, prostate cancer.(Robotic surgery, 8 wks IMRT, 3 1/2 yrs undetectable PSA, biochemical recurrence/rising PSA, one 3 mo round of ADT treatment, PSA now "undetectable" for last 15 months.) Currently on treatment holiday with undetectable PSA and normal T. I go to UNC Lineberger for PCa, F550.

In addition to the vegan diet and maintenance of an active lifestyle, I also take a large number of supplements and plant powders. Do the dietary change and supplements have anything to do with the better-than-average outcome with each of my cancers? (As I said in a recent post over at the PCa forum . . .) No way to tell. Would it work for anyone else? Impossible to say. Do I plan on stopping it anytime soon? Not a chance.

Be Well - cujoe

PS You might want to consider an anti-inflammatory diet for help with the joint pain.

[Summer4fun in reply to cujoe]

What supplements are you taking?

[DUKELAXDAD in reply to cujoe]

Thanks I have met with a nutritionist. But have not gone to the plant based diet yet, but your results sound convincing. Good luck.

[DUKELAXDAD in reply to cujoe]

I have started a plant based diet. After 3 weeks I can tell my lymph nodes have gone down. Thank you!!

[cujoe in reply to DUKELAXDAD]

DD,

Glad to hear that you are getting good response from the dietary changes. While on a daily basis I avoid all dairy and meat products, saving occasional animal products like seafood and dairy (deserts) for VERY special occasions, I still like Michael Pollan's subtitle for his book, In Defense of Food: "Eat food, not too much, mostly plants." That's a guide that will lead people to make better food choices regardless of their diet. His "Food Rules" from that book (and expanded into a separate small volume later) are easily remembered as guides to making good food/diet choices.

If you haven't read any of his books on food and diet, here is an old review from 2009 that provides a good summary. Pollan is an excellent investigative writer and regardless of topic, does a superb job of unraveling the history leading to where we now find ourselves.

webmd.com/food-recipes/news...

Keep doing what works - and Stay Well,

Ciao - Captain K9

PS I keep a spreadsheet of all my labs going back to 2013 and in looking over those labs since your now 4-year old post, I have realized a correlation for both my dietary changes AND 8 weeks of IMRT treatments I got in 2014 after my prostatectomy a year earlier. That was around the same time my white counts peaked, plateaued, and then started back down toward normal levels. As both the dietary/lifestyle change and the IMRT correlate closely with that peak, neither can be confirmed individually or in combination to have been causative. But as I said in my earlier reply and again just above, I continue to keep doing what has worked to keep me off treatment for all these many years. And since the IMRT was not curative for my PCa, it gives me some solace to think it might have contributed to my much better outcome with CLL. (By killing off some defective B cells). In fact, other that chronically low platelets, my blood labs have been normal/near normal across the board for the last two years!

[DUKELAXDAD in reply to cujoe]

Thank you. I will have to get that book and read it. I use the graphs on my chart. Take care and good luck!!

[barbkay17]

Interested in what you said about no sugar helping night sweats . Will try that !!

[DUKELAXDAD in reply to barbkay17]

Absolutely. I have stayed away from the sugar and the night sweats have not come back. I feel like at least something I heard works.

good luck.

[barbkay17 in reply to DUKELAXDAD]

Now something for the fatigue please !!