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LRF (Leukemia Research Foundation) for All Blood Cancers

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

Today I was at a Town Hall meeting held locally by the LRF. They had 5 doctors from major hospitals in the Chgo area, who specialize in the blood cancers. (One of them is the Dr I am seeing at Rush.) The Town Hall was people asking questions and the doctors answering them. There were some vendors there to povide information on some of the medicines available. It is also a good way to meet others dealing with blood cancers. 

There are two things I want to share with the group:

LRF web site is www.allbloodcancers.org    

      Another site with some good info.

I also picked up a book called "Cooking through Cancer Treatment to Recovery. Looking thorugh it I wished I had something like it when I started my treatment a year ago. 

      It's not just a bunch of recipes. Each recipe if flagged for what part of the treatment cycle they can help with.

      Nutritional info.

      A chart of verious side effects and what recipe(s) can help lessen the effect. 

I'm sure it can be found online but it was free at the Town Hall.

I think the LRF can be another good resource for all of us. 

Rocquie's picture
Rocquie
Posts: 841
Joined: Mar 2013

Linda, thank you for the resource. I was not familiar with the Leukemia Research Foundation. I went to their website and it looks like they have much helpful information. I would loved to have been at that meeting you attended. I have been to a number of meetings and forums and always find them informative and empowering. 

Can you imagine living--say--25 years ago, while having this disease? The lack of access to information? People were routinely not even told they had cancer as it was considered cruel and imhumane. Not to mention the advances in research and treatment. We are truly fortunate to live in the times we do. I hope things will continue to improve in the future and I believe they will. 

Please keep us up to date with what is going on with you and your treatments? 

Also, I'd love to hear some reviews of recipes in that cookbook. Smile

Hugs,

Rocquie

 

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

I need to go through the book and pick recipes for my husband to make. Since he is retired he does do most of the cooking. The only thing is some of the recipes call for things I won't eat, usually mushrooms. I figure if it is only one item it can just be dropped. I'll let you know how they are. 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

For posting.   I have never been to a meeting like that no doubt I would've found it inspiring. You know me I'm all about food especially the right ones to make me feel better. My oncologist observered my success and you know has recently lost 40 pounds on his own. I was never about losing weight (always pretty thin) but he ate horribly and I told him I was going to out live him...  I was going to out live my oncologist, I think it sunk in.

 

He's my age and had no energy, super sluggish and tired all the time.   Anyway I went off on a tangent sorry. I think I told you I was really tired, exhausted so tired I couldn't even drive my car so of course I called him. First thing he said you want to come in for a CBC, no because I know they're low (they always are).   The next thing he asked was if I was juicing.  Like a dog with her tail between her legs I said no.

I started again and eating Kale too.  With winter here and my garden gone, I'm not eating it everyday.  Well guess what even my husband and daughter started making them for me.  Independent observations on their part but they too see the difference.

Perhaps it helps with my immune system and energy. If you find anything in the cookbook to help  cognitive skills Please give me the recipe! 

 

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

Back in Nov I was still feeling tired. Last chemo was at the beginning of Oct. I just figured that my blood counts were low and with all of the holiday stuff going on I was just not getting enough rest. So this month I really worked on getting at least 7 hours of sleep at night and eating better. Still felt tired, not exhausted. Then I had my appt with my primary dr and my thyroid test showed my TSH was high again which explains why I've been feeling tired. 

I don't have the book by me right now but I will look to see if they have any recipes to help with cognitive skills. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

 In fact everything is checked and all is good......

Perhaps I just have to accept I'm not 22 anymore and healing for me is taking it's own time. Now I need to get in the gym, even if I can't half the stuff I used too.  I used to go all the time, eventually I grew to love it and by the time I left (before the crap hit the fan) I would look at the youngest, most fit person in class and in my mind I would tell that person they were going down!  The only people who beat me was a former Navy Seal and a Tour de France participant :-/

When I get my Mojo back they better look out!

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

Keep up with your juicing and I am sure you will be a force at the gym again. Like you said, it does take longer the older we are. 

I was able to get my thyroid meds today. I ended up missing two dosages but I doubled the iodine pills for those times. For me I will just be happy having the thyroid at the level it should be. That should be about the time they schedule the Stem cell.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I had to laugh when I read this,  yesterday I was a couch potato, no smoothies either only dreams of spandex clothes that no longer fit me and faint images of my gym. I WILL get there.  Regrettably I was a deflatted balloon.  18 hours I cleaned, organized my house for an event.  Endured 6 hour shoot after that.  

My grandmother just had a biopsy (blatter cancer). Whatever free time I had/have needs to be with her.   Worry about my mother.....

Back on the  merry-go-round.

life is pretty awesome when it dosent stink.

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

Sorry to hear about your grandmother. I hope they caught it early and that they can treat her. 

Ballons deflated because of the cold will inflate when warmed up. So being busy with your grandmother may help warm your spirit up and  energize you, getting you back into your smoothie/work out routine. If not there is always room on the couch potato couch for another person. 

I do love that last line of yours. Makes me chuckle. 

Anonymous user (not verified)

 "life is pretty awesome when it doesn't stink". Love it! I am working my way through my bucket list and its pretty awesome. In a strange sort of way cancer builds character and makes us recognize the important things in life. Add my quote to your list. " cancer would be a good thing if it didn't suck so much!". Best of luck!

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Wondering why we have to hit a brick wall in order to be free of the mundane and witness lifes glory?  

Cancer does build character and strength, each of us are a force to be reckoned with no doubt.  

I remember in the first moments of diagnosis I suddenly was grateful it was me and not my children or husband.  Then in the wake of my new reality, I began living my bucket list.  I'm living my life on my terms with renewed vigor.  My father's diagnosis played an insurmountable role in all this, I'm sure.  So I say, any day above ground is a blessing so why not live like it!

By the way, my quote was remarkably similar to yours.  I changed to last word to stink.  Yours is what I really meant!

Best of Luck to you!

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

I finally checked th cookbook and they do not have any recipes to improve cognitive skills. They do have recipes for chemo brain. I'l put something together for you. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Linda, you are so kind!  Thank you but that was a total JOKE! 

Surprisingly I did/do have some confusion but I took Rituxan and didn't think it would happen to me.  Perhaps it's the stress, I don't know.  I don't feel stressed in anyway but I have been told in my case it's involuntary.  Apparently my body independently is dealing with the stress that I buried.  I'm guessing although I'm much better, I'm not who I once was mentally or physically.

Rituxan-chemo brain? 

I remember when I was in the thick of treatment my husband asked if I had a food processor.  I love to cook and have all the gadgets but when asked I looked at him like he had two heads, paused and wondered what was a food processor!  

I'm not sure but when I was in treatment the nurses increased the speed of Rituxan as they do when they think you can handle it.  I couldn't and my ONC said NOT to increase the rate.  Well they did and everytime (even after me reminding them) I would start to see things before my eyes.  It was a flash of light and horizontal lines similar to a black and white TV that lost its signal.

Now my head is mush.....

I told both doctors, they have no explanation for the brite lights or lines.  Dana Farbe doctor said it most likely was a side effect but because the lines were gone and flashes it should be fine. Well my memory isn't fine and I do believe it happened when they gave me the drug too fast.

There are no clear effects of all these drugs, the influence on each individual varies and heaven forbid you throw in a little stress to the mix.

 

Happy, Healthy Monday! 

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

I usually have the chills from Rituxan and restless legs from the high dosage of Benadryl. This last time I also had the muscle and joint aches. Or that may have been caused by the high TSH of the thyroid. On a site called RXlist they do list confusion, trouble concentrating, vision problems or weakness as possible side effects of Rituxan and that the dr should be notified. I'l let you read the whole thing.

http://www.rxlist.com/rituxan-side-effects-drug-center.htm

For me the worse problem I have had is with teh high dosage of the Benedryl. This last time I also had muscle and joint aches but that started before the treatment and was most likely from the high TSH (thyroid) level. I think the Rituxan just enhanced the whole experience. 

Ain't cancer treatment fun!

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Thanks you.  Like you I had chills,  and freaky leg syndrome which drove me batty but that only lasted a day or so but I also had heart palutaions, fluttering, low white blood cell counts, shortness of breath, weakness (still have those)......  I had a few more lovelies but still it's done and my result was excellent.  I told my doctors and they didn't seem alarmed.  It's hard.  The doctors see me and I look fine, I do the darn tests they ask and they're shocked at how well I do but they have compared me to themselves (not a fair comparison because they don't have cancer and they look as though they don't do any phyical activity).  They fail miserably on listening, don't know what I lost.  My state of  atrophy  (Little drama admitted) may be strong to them yet there have been days I almost fainted from yard work and sweeping.  It's so frustrating they don't get it. 

As I typing this I realize that patients is a virtue I don't possess, it's been a year and I expect to be Wonder Woman.  Perhaps I need to relax, yuk!

I'm a born optimist, this too shall pass.

I actually looked for my sneakers yesterday perhaps I'll start training tomorrow!

Hope you're well!

Anonymous user (not verified)

i had restless leg syndrome, leg muscle and knee pain the entire 2 1/2 years I was on Rituxan. All theses symptoms pretty much went away after i finished Rituxan.

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

I've had knee problems for years. Lately they hav ebeen worse but I was blaming the TSH levels. Never thought it could be the Rituxan. Heck, it could even be a combination of the two that made me want sit down and never get up. It is getting better but it is 8 days after the Rituxan and 10 days on the new thyroid med dosage.

The problem with my knees doesn't exactly help with my goal to exercise more. 

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