have any chemo treatment for my tonsil cancer.

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.

What is a nurse navigator? Does this come from the hospital or my insurance co?

K

all what I needed to do, when to do it, etc., in my breast cancer treatment. I didn't have chemo, but she helped in making appointments, printing out documents that I'd need for other doctors, etc. It was a great help when I was in shock over everything.

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.. :&gt
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. :&gt 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....

Hi Pangaia,
Thanks for your response! So I have something called angioimmunoblastic TCell non Hodgkin's lymphoma. I start CHOP on Tues- 3 days on (3 hours, 1 hour, 1 hour) with 3 weeks off for six cycles. I've been reading up on this (probably way too much) and it appears that if the chemo works, a bone marrow transplant is the finishing touch as that's the only real cure. I called the lymphoma research foundation who matched me up with a buddy who had the same thing in 2012. We connected by phone today and it was amazingly helpful. She will be my coach and guide and for that I am grateful.

Losing my hair freaks me out but after reading the odds, I have to say that freaked me out more... Happy to know it will grow back as good as before (I have very thick, lustrous hair).

May want to find a local support group- please let me know how best to proceed.

I've been out of work since July and am on Cobra and I am concerned about not having any income but I do have savings and a great family so somehow I will get by...

Thanks for the chemo mouth advice- will remember that should it come up. I've already lost a ton of weight so eating healthy junk food (have been on a diet most of my life), might be a nice treat. Currently between fever and nausea, my appetite is pretty much gone.

Thanks again!

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. :&gt

Keep in touch and eat lots of spinach...

Protein and Probiotics are key to keeping your strength up. You can also ask about scopolamine patches. You wear one for 3 days behind your ear for nausea - and they help with appetite (but not taste buds). Ask your doc about that as well. My prescription was for 6, so would last you through a few cycles before having to get a refill.

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

No idea where this journey will lead but am grateful for all of the amazing support here. Being a caregiver is quite a big challenge- I hope you are getting support that you need as well.

Thank you again!

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.

Lost my dad to cancer 3 years ago this month. Lung cancer from agent orange exposure in Vietnam, so nothing like yours. I like to check in this forum on occassion just to see if there is anything I can offer from my experience with his illness.

Chemo mouth as mentioned above is bad. My dad drank ensure often when nothing tasted good to make sure he was getting vitamins/nutrients. He also become addicted to Godiva Truffles, which I gladly supplied to him.

Just rest, take care of yourself, be confident that you can win. Slow down, stop internet surfing, and focus on NOW and what you can do right now to feel better.

Strength and healing vibes are coming your way.

Sorry to hear about the loss of your dad. My dad died of the same dreadful thing about 6 years ago- he'd had other cancer before but it came back in his lungs.
Will take your advice (already noticed a difference in my paying attention to little things- spending more time outside, enjoying the glorious weather here in Florida, relishing my friends and family, etc.). About to post a quick update- everything on hold for a while which puts me in limbo land but am trusting in the universe to make sure this comes out all right...

Thanks again

The night before I was to start the chemo, my oncologist called to say that while he was still confident in his assessment, one of the stains came back inconclusive after a few tests. They therefore sent it all up to the chief of research in lymphoma pathology at the Ntl Cancer Institute in Rockville, MD. So it could be a few days or a few weeks till we have word. Because they are not 100% positive that this is lymphoma (97%) and there is a remote chance that this is a bizarre infection, he did not want to start the chemo regime yet. So I wait in lymphoma limbo land.

They plugged me into an IV via my port and doused me with prednisone and anti nausea stuff and tons of fluids (haven't been able to keep food or liquids down very well this week) so I'm feeling a bit better now which is great. And with the nausea mostly down I can stay on top of the Tylenol so my fever is down which is also helpful. the stress of waiting this out- not so good but it's out of my hands...

Thanks again for all of your support and suggestions. Will update once I know what's what.

hoping for some fluke that it is a bizarre infection that just vanishes.

Whatever the outcome, chin up and step by step. Waiting is not fun!

Wouldn't that be grand! I love that image- little shrinking lymph nodes just going poof like cartoons- thanks for that!

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.

Waiting is bizarre- doing my best to keep busy. Praying for a miracle...

Same plan as before. Seems the higher ups at the Cancer Institute agreed with my oncologist -Angioimmunoblastic T Cell NH Lymphoma. Gonna be a rough few months I suppose. Let the battle begin as they say on Iron Chef America. Appreciate all of your kind comments and suggestions...

Cheers.

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 !!!!

Truthfully I'm scared shitless but I know there's no turning back and the only way out is to plow through. Still in the "what the fuck?" phase with occasional bouts if sobbing.
Will remember your frozen French fries story with a smile. The prednisone this week is having a similar effect. Went from weeks of barely able to keep anything down to barely containing my desire to devour everything in sight. I'm no lightweight although I've lost quite a bit of weight already but have plenty more to loose.
My biggest challenge is disciplining myself not to read the online statistics for AITL. Or some of the weird facts like it often effects men over 60 who eat a lot of meat. I'm a
56 year old female vegetarian.
Go figure.
Thanks again for your wonderful support. Glad you are there! Where are you by the way?
Cheers....

Last edited Sun Feb 16, 2014, 08:36 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....

5 more (3 weeks apart, 3 days each) to go. Feeling ok- energy goes quickly and by mid afternoon I'm pretty pooped and needing a nap. I know this is the easy part ("intense chemo foreplay) and it will be uphill from here on in. 5 more months feels like a very big mountain but I'm gearing up for the challenge. And relishing the minutes of semi normalcy for now.

Thanks for all of your kind words and support...

When you feel tired, just rest. It's ok. Take advantage of it and let your body have what it needs.

My body has been hijacked by evil gremlins. Itchy rash week one combined with mild nausea. Migraine headaches one day, total exhaustion another. Two days ago my mouth became a mine field of sores. Today I awoke to an acne like, ugly rash on my face. Very depressing.

I have a bit more energy today-hopefully this means my white blood cells are kicking in and getting my red blood cells engaged since as of Tues., my counts were at the "time for a transfusion" level...

Wig shopping tomorrow. May take a Xanax before we head out. Entire thing creeps me out...

Gonna me a wicked long journey ahead...

I've already cut my hair very short so I'm thinking it's probably too late to do this however. Happy to hear your daughter is doing so well-that's very encouraging! Thanks again!

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.

The acne and mouth sores have calmed down- what a relief. I can swallow and go out in public without feeling like a leper. Still having periods of tiredness which is to be expected but am relishing this last week, knowing that this is as good as I'll be feeling for many months. One week till round two of chemo. Soon afterwards, as I understand it, is when my hair falls out. Even as I type these words it still feels like I'm writing about someone else. Not sure I am ready yet to embrace my baldness proudly- maybe one day but the whole thing still causes my eyes to well up with tears (I have beautiful, thick, brown hair). Not sure if I mentioned this but the guy who sold me my wig, who is a character (like from a movie) with a big heart, told me that as soon as my hair starts falling out, I am to call him and schedule an appointment so that he can shave my head since that's part of what he does. He only works with cancer patients and shaving their heads is - or appears to be required.

Seeing my oncologist tomorrow in great hope that my blood work will be better then last week when I was close to needing a transfusion. I'm actually feeling pretty good - almost normal (except for the massive elephant sitting on my chest). Hopefully this means that I'm getting stronger and those white blood cells and red ones are snapping into action and doing their thing.

Discovered this week that red wine no longer tastes good- that was a sad surprise. Not that I planned on drinking a lot but having a nice glass of red wine with dinner seemed harmless enough. Sadly, after one sip I realized it was not to be. Hopefully one day my wine taste buds will return. Haven't tried vodka yet however....

Neither of my lips is feeling all that stiff but I will work on it. Promise.

Thanks for your support.

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? :&gt
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?

It was discovered yesterday that my port is broken which means it needs to be removed and a new one inserted. They are doing this round in my arm but it needs to be done before the next round in early April. Challenge is it also needs to be coordinated around when my bloodwork is strongest- this week or the end of the week before my next round and the surgeon is booked up all month except an evening or a late afternoon slot which I cannot do because fasting all day is not a good idea. So I've asked my doctor to reach out to the surgeon to see what can be done.

As with my type of lymphoma, this is a rare occurance. Guess I'm just special.

Hair is falling out rapidly- getting used to hats and scarves. And to the reality of the situation. I did buy a wig which I can only wear once my hair is all gone so the next step (prob next week) is to have my head shaved (the wig guy who only works with chemo patients will do this).
Oh yes and the night before the start of the second round, my oncologist called to say that the pathologist is still bothered by the fact that one of the slides is showing "normal". So she resubmitted the entire report to the head of pathology at the national cancer institute in MD (same person as before) who agreed that there is a slight chance (10% approx.) that its not lymphoma but agreed with my oncologist that we should proceed with treatment. So this followed by the port news made for a bizarre beginning of round 2...

I am doing my best to journal this on a blog site, and if you are interested in reading it, send me a PM and I will send you the link.

Time for bed. Thanks so much for checking in!

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. :&gt 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

3 chemo sessions down and 3 to go- each session is 3 days with 21 days in between. The last one wasn't too horrible- am hoping this one (and the remaining 3 more) are more of the same. Taking it all one day at a time. Feeling very grateful that I still feel fairly normal not nearly as ill as I'd feared.

Hopefully this round will fly by without a lot of side issues.

I haven't been on DU consistently lately...Just caught up on your log. What round are you on? How are you feeling? Let us know how it's going. We are all behind you!!