Diagnosis-rare form of non Hodgkin's lymphoma
Chemo regime starts Tuesday-3 days in a row, 3 weeks off, 3 days chemo for six cycles. Called "CHOPS" chemo protocol. Terrified, horrified, shocked, sad, angry- entire specturm of emotions as one would expect. Keep hoping I will wake up and have it be just a bad dream...
Anyone out there already through this or something similar? Any helpful chemo tips to share? Welcome any and all suggestions and support. Have a feeling I'm in for a long, brutal few months...
Thanks...
= new reply since forum marked as read
They can be extremely helpful in going through all of the treatments. I was fortunate enough not to have to have chemo, but the nurse navigator was a lifesaver for me for everything else.
I am sorry you are going through this my fellow survivor. 
but my insurance company also offered that service as part of my health coverage. I preferred the inhouse local resource but it was good to know that there were options. Ask the Oncologist's office.
I don't know exactly what type of lymphoma you have. There are many, but non-Hodgkins lymphoma, thanks to its being a very aggressive form of blood cancer, means that with good treatment it can promise very good outcomes.
In July 2012 I was diagnosed with Stage 2 diffuse large b-cell lymphoma-- a type of non-Hodgkins lymphoma. . Including a tumor on/near my spinal cord.
I was treated at Strong Memorial Hospital in Rochester, NY, a teaching hospital with a very fine cancer center. They suggested a national clinical trial . After a lot of FAST study, I agreed to take part in the trial.
Treatment was similar to yours but a little different-
R-CHOP-- 1 day for six hours or so, repeated once every three weeks for 4 cycles. So about 3 months. No radiation.
For me, the chemo was not much of a problem.You just sit there in a nice lounge chair, doesn't hurt...Bring a book and some munchies, I-Pod, etc.. :>
I had no nausea during the 3 months.. well once the 4th day but 1 pill and it was gone..they will give you great pills for that. Lost my hair, now have it back. In fact it changed, more curly, and looks better now. :> I would get tired on certain days but could work 50 % or so.. Went to baseball games, swimming, etc..
I have been cancer free since October 2012 and am confident.
Oh, one bad thing. You will probably get what they call chemo mouth. Everything tastes like shit.. so here's your chance to eat some junk food, not so healthy but, what the heck..
OK, now that you know there is hope, more than hope, actually.would be more than happy to put you in touch with very good support groups.
Hang tough. Things will get better....
Sounds like you are doing well having a 'buddy.' That is REALLY GREAT!
I found something similar through the Leukemia & Lymphoma Society.
Here are some contacts for them They were very helpful to me.
http://www.lls.org/
:: Beatrice Abetti, LCSW | Information Specialist, Information Resource Center
:: The Leukemia & Lymphoma Society | 1311 Mamaroneck Avenue, White
Plains NY, 10605
:: P: 914.821.8923 | F: 914.821.3723 | www.lls.org | abettib@lls.org
:: Information Resource Center: 1-800-955-4572
I just read the info at the Lymphoma research Foundation about angioimmunoblastic TCell non Hodgkin's lymphoma. It does look like your type and stage of the disease is more difficult to 'cure' than mine. So what. That's what I would say to it.
One of my 'buddies' with whom I talked in 2012 had had stage 4 diffuse large b cell lymphoma about 12-15 years ago, when the treatment was not as good even as now. He had it all over, stage 4, cancerous nodes everywhere, cancer in his brain, etc.. He's doing fine.
So I think first, a positive attitude is really important (easy for me to say, I know). to not become 'attached' to it. If you can't beat it, you can't, so why worry. And if you can, you can, so ....why worry.
One thing having cancer did for me was to 'slow' my life down. And in slowing it down, I have more time.... Like a baseball player--It has been said that the most difficult thing to do in sports is to hit a baseball. If a batter can slow the game down, the ball looks like a huge beach ball slowly floating in toward him, instead of coming in at 95mph. He has forever to pick it up leaving the pitcher's hand, forever to pick up the spin so he knows what kind of pitch it is-fastball, curve, slider, change-up - forever to decide to swing or not, and forever to swing. Instead of having 4/10ths of a second to do all those things, he has hours! So my life has become longer than before.
The cancer center where you are going should DEFINITELY give you info on local support groups.
One thing, don't go Googling 'cancer,' or whatever. When I first did a search for my spinal tumor it really freaked me out. Big mistake. Somewhere it said I had like 6 months, tops. Don't read that stuff.. Although, the Lymphoma research Society info looks fairly good.
I don't know where you are, the quality of cancer treatment there, etc. But, the more experienced doctors you can get the better. I was lucky as mine were top notch. In fact some of the info on the LLS website was written by Jonathan W. Friedberg, MD and Lynn Rich, MS, NP. who are at Strong Hospital. Lynn, in fact, did my bone marrow biopsy. (BTW- I also had 4 lumbar punctures. Just in case you have to have one--they give you lidocaine so not bad at all.)
And take my comment about junk food with a grain of salt.
Having Leukemia and going through chemo means you want to do everything you can to strengthen your immune system. Lots of veggies, a probiotic is good. Don't trust doctors to know much about diet.
OK.. enough for now, Don't want to tire you brain. :>
Keep in touch and eat lots of spinach...
I was/am just the caregiver on this journey, the only chance for a cure was a BMT which was done in October 2010.
Stay determined and informed (you can delegate that task) but someone needs to ask questions.
One step at a time!
Best to you and yours
even though our journey has different views ... aka a different diagnosis. We're still in touch with several people from Hope Lodge in NYC and that is a wonderful experience.
Fortunately I've had plenty of support and that just filters through to the patient IMHO.
but a positive attitude and asking questions helps immensely.
Hang in there, easy for me to as a caregiver, but it does help to maintain a positive attitude! Let someone else google and ask the hard questions ... just focus all your energy on the positive outcome.
Someone else can absorb the stress, let them ... and stay strong.
I've been following your thread since you first posted.
Looks like you are emotionally in a much stronger place than you were last week. if you go back and read your first post...what a difference.
So glad yo hear that.
Godiva truffles... Oh yea !!!!
Chemo mouth-- I didn't find things tasted bad.. just no taste. In fact, I will tell you a little secret, in case you need a laugh.One day I bought a bag of frozen french fried. And I ate almost the whole bag in one night. I kid you not. DON'T TRY THAT... 
Anyway, we're all pulling for you.
Iron Chef? really?
Go get'em !!!!
Last edited Sun Feb 16, 2014, 09:36 PM - Edit history (1)
You also cracked me up with your comment "..... men over 60 who eat a lot of meat. I'm a 56 year old female vegetarian. "
I'm a 70 year old male. REALLY??? No way...
When I was going through chemo in the summer of 2012 my sister gave me "The China Study,' proposing to connect cancer with eating meat. Now, for a guy who grew up in NJ in the 1950's giving up meat was NOT on my bucket list! I mean, when I was a kid we ate dirt! It's good for the immune system. I rarely get sick, just ...cancer.
But since 2012 I eat very little meat at all. Mostly vegan, as is my sister. But I made some real meatballs last week, so.
That is one advantage of getting cancer.. good way to lose weight. I'm kinda medium build but lost about 10-15 pounds.. until I discovered the french fry trick.
I repeat DO NOT READ on line stuff. 
Stick with real cancer sites that you know.
Want another weird story? Last summer I had cataract surgery-both eyes. Went well. BUT, the day after the second eye, I got.. BELLS PALSEY ! Talk about 'WTF?'
The neurologist gave me.. prednisone. Ten days later it was gone, but during those days my right eye would not totally shut. Which is dangerous at night because it can dry out. So, I was told to tape it shut at night.. Of course 21st century medicine doesn't make a product to tape one's eye shut. So what did I have to use? SCOTCH TAPE! Try it some time. See if you can tape your eye shut. It will take your mind of cancer, trust me..
As you asked, I live about 40 minutes from Rochester, NY, which, as I mentioned, has a very fine cancer center at Strong Memorial Hospital. It sounds like you are in good hands also.
OK. I'll keep watching.
Chill, babe....
When you feel tired, just rest. It's ok. Take advantage of it and let your body have what it needs.
Well, sounds like things are a bit 'rough' right now, at least uncomfortable, if that is not too mild a word..
But, something comes across in what you say here that I find really encouraging.. your strength and sense of humor, in spite of it all.. 'gremlins.' Get rid of those gremlins. It was a lousy car, also.
DOES sound like the white blood cells are working hard for you also. My oncologist was ALWAYS watching that.
As for the wig.. just an experience. When I was going through chemo, of course I lost my hair, but being a guy.. not the same thing, eh. BUT, I do very well remember seeing some women each time I went in who wore their baldness ....proudly ! They walked upright with a firm stride, and they looked absolutely beautiful for it.
Keep a stiff lower lip. -- I know-- it should be upper lip.. but how does one keep a stiff UPPER lip? Try it. It can't be done.
But you CAN keep a stiff lower lip.
How did your second chemo go?
And the hair? For what it is worth, your hair is..hair. just tiny molecules and atoms ans stuff. It's bot YOU.
Have you found a wig you like? Or maybe a couple, one for day and one for evening..
I also couldn't taste red wine so had to stick with a really good Spatelese. For me I could taste very sweet and very salty the best.
remember the french fries? :>
Whatever, be careful with the alcohol. It doesn't always mix well with the drugs..
Hope you are doing well, feeling stronger, and can be patient.
PS: How's your lower lip?
and ports and taste and over-booked surgeons..
Is there another GOOD surgeon who could do the port?
I mean at a cancer center this must be almost a routine thing, ot at least not uncommon.
I was lucky-- didn't need a port but quite a few of the other patients I saw when I went in for my chemo treatments did have ports. The 'infusion center,' as they call it here is really big.. must be.. oh..30-40 chairs...
Yes, get your hair cut if you can. Otherwise you have hair all over the house. :> I got mine cut way early.. Of course I don't have your kind of hair (although a lot) and I'm a guy.....
Yes, I would like t have a look at your blog so I will pm you.
All the best,
Bill
Hopefully this round will fly by without a lot of side issues.
