Lymphoma!

[SquirrelMaster]

Just curious as to whether or not any of the posters on this board knows of anyone that has had it, or has it now. I'm wondering because I very recently had a biopsy done and I'm currently awaiting the results. Was/is the treatment particularly hard on your body? What kind was it specifically? I'm not really down about it persay, just looking for real accounts of what has happened to people, and not just the "statistics" that I can look up on the internet, or that I get from my doc.

[cubfan1126]

Yeah. My sister was diagnosed a few years ago.

 

Chemo and radiation beat it - sort of

 

it recurred

 

so she did a stem-cell transplant - (there are uses of stem cell research for things other than cloning) (Oh wait ... no there aren't ... they took some of her and regenerated it to other parts of her body, so that was a form of cloning. See they just created a better her rather than a new her.) Any way that truly beat the lymphoma. Gave her 2 more years of health - This treatment will really beat you up but it's worth it.

 

Then she got breast cancer. (thought to be from all the radiation she went through)

 

More chemo

 

Now she's back to her spunky old self (65)

 

My recommendation is go for the stem cell right away - it'll knock you on your butt for a while (6 months?) but you'll beat the lymphoma.

[SquirrelMaster]

Thanks for the reply. Was diagnosed with Hodgkins Lymphoma. Not sure yet which kind. Going to see an Oncologist tomorrow to find out different treatments and such. Probably another week to see what kind specifically.

[hawing]

I wish you well with whatever course of treatment you follow.

[cubfan1126]

Best of luck to you squirrel.

[lcbj68c]

Good luck and keep us updated. If you need help, speak up. This site is full of amazing people.

[SZBrewerFan]

Squirrel,

 

Best of luck to you and your family while you go through this. I will keep you in my prayers. You seem to have a pretty upbeat mindset, just make sure and keep that. Your mind is extremely powerful and being positive and knowing you can beat this will go a long way.

[Brian the Automator]

SquirrelMaster, you're in our prayers as well. Hodgkin's Lymphoma seems like it is one of the most curable forms of cancer. Best of luck with everything, I know this kind of thing just dominates your life when you're going through it. We're all with ya!

[brucrustu]

My dad is currently taking treatment for non-hodgkin's lymphoma. Called Mantle cell lymphoma(MCL). There are lots of nonhodgkins and its one of the more rare ones. He's in a research trial at UW hospital in madison. 25% of his bone marrow was "involved" in Feb when he was diagnosed. Bone marrow biopsy last week shows NO mutated b cells and he is in remission.

 

I read alot of info on the lukemia lymphoma society's web site. They have a forum for almost every type of lymphoma out there.

 

The treatments were easy for my dad(59yrs.) at first but got worse and worse.

He took four types of chemo(abreviated drug names vcr-cvad) for four days straight while in the hospital, then went home for 17 days and then started again for six total cycles. By the sixth round he was basically bed ridden for two weeks, and spent 6 extra days in the hospital with pnuemonia. That was 4 weeks ago and today he is at work on the farm with me. He's hauling manure and feeding cows just like nothing happened. If I'm lucky he'll go home after a 12 hr day today. He says he feels better than he has felt in at least a year.

 

Part of his trial is to continue one drug called rituxan long term. This is called mantance therapy and he is handleing it very well.

The mantance therapy is to avoid a stem cell transplant. They are VERY hard on people his age and show no better results on MCL than chemo without mantance. SO hopefully mantance will extend the remission even more.

 

Depending on your location in the state I would suggest UW-Madison(where my dad is treated by Dr. Longo) or

Gunderson Luthern at LaCrosse(where my sister and brother in law are doctors).

I have personal expierance at TOO MANY cancer centers and these two IN MY OPINION are head and shoulders above the others.

Not to say there aren't others that are also very good.

 

 

They gave my dad 50% chance of three years when diagnosed and he is in first remission just eight months later. So there is hope and treatments have come a long way.

 

Two books that helped my Dad and our family are

 

The Anatomy of Hope by Jerome Groopman, M.D.

 

The Last Lecture By Randy Pausch

 

 

Every one who offers thier prayers and thoughts I thank because it can't possibly hurt, and now I offer my thoughts and prayers to you and your family.

[SquirrelMaster]

Thank you very much everyone. It has been a rough couple of days, going to a couple different oncologists. But I'm planning on going to the cancer center of america in Zion. I figure I might as well see a true specialist who only deals with Lymphoma. I've heard nothing but good things about this place, so I'll let you know how everything works out. Once again, I appreciate it. Now I feel horrible for lurking for the past 8 years and not really contributing! :P

[SquirrelMaster]

Just a slight update. My crap insurance won't let me go to Zion, so UW Madison it is. When I start chemo, I am also going to taking a multivitamin, as well as a vegetable/fruit shake every morning consisting of blueberries, carrots, and kale. Hopefully this will help offset some of the side effects of the chemo. Once I start, I'll let you know what my daily regimen is, and how my it helps my body get through the chemo.

[Gobias Industries]

Best of luck sir. You seem to have a great attitude, which can do nothing but help.

 

Edit: Really great complete liquid multi-vitamin. Liquid so it absorbs better and doesn't make you nauseous. Good mixed in with a breakfest smoothie.

 

Link: http://www.vitacost.com/Liquid-Health-Complete-Multiple

[brucrustu]

My dad had trouble with dehydration and found gatoraide helpful.

 

I would check with your doctor about any multivitiamins, they discountiued my dads at one point.

 

I would strongly recommend skipping the blueberry carrots and kale when you are nuetropenic. Unless it is pasturized you DON'T want it during times of low immuno response.

 

A close friend of mine had a terrible time in Zion so maybe it's a blessing in disguise.

 

Good Luck and I hope I can help at any point

[SquirrelMaster]

Liquid Health makes GREAT stuff. I currently take the daily multiple. Such a wonderful product.

 

 

That makes sense about being neutropenic. We will see what the dr. says about nutrition while on chemo.

 

 

It really is weird, having this. I don't drink, smoke, or any sort of recreational drug crap. Ive always eaten well. I was thinking about this at work today, that they don't truly know what this is caused by. Man, life can flip you on your backside in a heartbeat!

[SquirrelMaster]

Got the result from my bone marrow biopsy. NEGATIVE! I was extremely relieved! Sept. 3rd is when I start treatment. I feel like Brewerfan is my personal journal for this crap.

[brucrustu]

should have warned you; UW sometimes tries to skip sedation for bone marrow biopsy. My dad was NOT impressed.

 

When my Dad's biopsy came back negative my folks cried for like 2 hours. I might have shed a tear or two as well.

What great news for you.

Continued best wishes

[sgtcluels]

Wow. Best of Luck SM. Great news about negative bone marrow results. Speaking of that, I implore everyone to join the National Bone Marrow donor program to help people out with Lymphoma/Leukemia. You will have to give a few bucks to help with the DNA sample (About 25 bucks), but all it takes is a few swabs to your cheek and a few minutes of your time. The actual Bone Marrow donation does require sedation and a few day recovery, but it can help save a life.

[SquirrelMaster]

Yeah, they wanted to just numb the area, but I told them to sedate me or I'm not doing it. lol Supposedly I was replying to every question and wiggled around when they put the needle in. Don't remember a thing though..

[mothershipconnection]

I'm sure you've been told this, but while on chemo you should try to just eat foods you kinda like, but not your favorites because having the flavor of preferred foods paired with miserable illness will often cause a conditioned aversion to that flavor.

[SquirrelMaster]

Got my first treatment yesterday. No problems with the injections at all. A little nauseous today though, even with the pills they gave me for it. The biggest difference I've noticed so far with food, is milk tastes somewhat different. Not bad, just different. Sucks considering I LOVE milk. http://forum.brewerfan.net/images/smilies/frown.gif I think I might have to drop classes at MATC too. Not sure I'm going to be able to handle that, plus work. http://forum.brewerfan.net/images/smilies/frown.gif

[Brian the Automator]

Did they give you Zofran for the nausea?

[SquirrelMaster]

Dexamethasone, and Emend. Those are for 2 days after every treatment. Prochlorperazine maleate, and Lorazepam as needed throughout the days between treatments.

[Brian the Automator]

If you ever have nausea that your current meds don't cover, ask them for Zofran. It's a magic freaking bullet.

[SquirrelMaster]

Haha, will do! Thanks.

[wisconsinfan47]

I've also heard you should eat your least favorite foods right before chemo, to avoid associating good food with the nausea and thus developing an aversion.

 

Best o' luck.