Pet scan

hi this is mbh456,
I'm going in on the 4th for a pet scan to see if or what results the chemo has had on my NHL. i need support as my husband says they'll stop treatment if no response. I'm really scared right now. does anyone know how or what they do if r-chop doesn't work the first time?
well, take care. marybeth mbh456

Hi MBH, and I am sorry to hear that you are not getting the kind of support you deserve at home. I don't know why your husband said what he said but what does your doctor say? It seems to me that there are numerous alternative strategies still available that have not been applied in your case, based on your posts.

I would also be surprised if you have no reduction at all as a result of the CHOP-R you have been doing, it is quite effective in knocking FL back so that those of us who have it get a number of years of normal back in our lives. It is true that FL comes back nearly always (but NOT always), but it is also true that it is nearly always put into remission as a result of initial therapy which is what you are doing.

Other therapies that are out there include bendamustine with rituxin or radioimmunotherapy using Zevalin or Bexxar. There is also stem cell transplantation, though that is quite controversial for those of us with slow growing cancers. More information about these options can be found here: http://www.nhlcyberfamily.org/types/follicular.htm

So, again, I have no idea why you would be told what you were told but, to me, it is ridiculous. You should speak with your doctor or other care team member and get the facts directly for yourself. You deserve the truth and I don't believe you have it at this time. I wish you well and I wish you

Good health,

kermica

dear kermica,
hi well, that's a long story as to why my husband said that. i'm ok. i will definitely talk to my cancer doctor. she said they would treat my cancer aggressively. and if the R-CHOP didn't do it they would try something else. I'm feeling better somewhat and can go without a pain patch for about 4 days before getting into pain. i usually put one on earlier now. how are you doing. well, I'll definitely talk to my cancer doc before panicking now. well, take care and i hope you had a nice Christmas and new year to come.
Marybeth mbh456

Hi Marybeth, Sending healing thoughts your way! Hoping that you get good news on the 4th. Marge

Hi Marybeth, Good Luck on the 4th. Stay out of the L blues department during the days before, okay? I will be thinking of you.
Kathy

i actually got very good news on the 10th. my cancer is almost totally gone now. i have one more chemo to go through. i’m handling chemo so well now. i just hope it is not a premature stopping it. i had only two lymph nodes on pet scan that were small. when i started out my tumor markers were 19 now they are 3.6 and they consider you cancer free at 3. i go for chemo again on 31st. then 6 months off. then the r part of r chop for two years to help me stay in remission longer. i’m really glad i’m alot better now. i just need to get my energy back. well, take care. marybeth mbh456

Marybeth, congratulations on your good news and great progress!!! Before you know it, I believe you will be hearing that special word from your doctor - remission!

Keep us posted, MBH, I think you are one of the DLBCL patients who will beat this completely...way to go.

Good helath,

kermica

I second that! What great news, please keep in touch. God Bless, Kathy

That is good news, Marybeth!!! :o)

i'm feeling much better now. i'm surprised that it only took 6 R-Chop treatments. it has been a long recovery period for me. now to get my energy back. keep in touch and if i can help with info let me know. take care. marybeth mbh456

Hi MaryBeth, Glad to hear you are getting your energy back. I am back from my MD And. test trip and only had two nodes that increased a little in size and not enough to start chemo. All the others have reduced in size during the last two visits so I think I may be having my own remission going on. The two that have grown a little are in the groin area, inside each leg. The doctor thinks these may be reacting to another infection I just got over. He agreed to make the next visit 4 mo from now and if the numbers are still good at that one, I will go to 6 mo visits. This was great news and will cut the testing in half. I didn't do well on the bone biopsy, as my blood pressure started to drop and she had a really hard time getting a sample. We finally stopped after 5 tries and I am to have it done with anestesia from now on. I guess my bone is really dense and I have lots of pain regardless of how many numbing shots they do, which drops the BP. They were backed up by three hours at Out Patient Surgery so we went home and will have it done here or at the 4 mo one there. The bone bio would only tell if the CLL was increasing, and because it was so low before and the other numbers so good it wasn't so important. So that is my good news and I am also going to get the port removed as soon as I can get in. I will just have to continue being careful in the exposure end around people to not set off anything. Keep in touch and see you in the games. God Bless! Kathy

Kathy,
that is good news. but i feel for you on the bone biopsy part. i can't imagine 5 tries. I'm glad you will be out next time. i broke out in hives all over my bald head and neck. very painful. i am getting over a cold virus myself and my counts are normal now so i seem to be getting better quickly now. my neck glands were swollen too but it's from the virus. at least i hope they are. there's always the big c to worry about and falling out of remission. I'm happy your glands are shrinking and you don't need chemo. chemo was a big hassle but worth it for how sick i was. well write me again and keep in touch. take care. Marybeth mbh456