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merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Hello to all. I am new to this site but finally decided a little support might be in order. I was diagnosed with follicular NHL grade 1 stage 4a 1 year ago this past July. I participated in a clinical trial of rituxin and ontak from January thru March 2009. I had to stop the trial early because of an allergic reaction. I had 14 out of 20 doses. My PET showed a partial remission...90%. I returned on july 1st for my first follow up CAT scan and everything had held steady. I am due to return to Mayo in October and have reached the point where I still have some time but its coming and making me nervous. I was diagnosed because of a lump in my neck. That lump is getting bigger and of course this concerns me as I know it will take chemo to shrink it. I feel I have done pretty well so far but lately I am more fearful with lots of mood swings. I am having a harder time navigating my way through them. Any simular stories or feedback would be appreciated. Thank you.

alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

http://www.rituxan.com/ra/patient/about/safety-info/side-effects/index.mhttp:
//www.rituxan.com/lymphoma/patient/about-rituxan/index.m

hi, these are a couple of sites you can check out.

im after my 3rd cycle of R CHOP and i suffer very much with mood swings. so if youre going to have chemo you had better explain how you are feeling to the doctors and maybe get something to help, 'cause it aint no fun.

best of luck.

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Thank you so much for your comments. I have a good support system but theres nothing like hearing from someone that shares the same things. I will definately mention the mental aspect to my MD who by the way is great. He has indicated to me that the chemo if needed would be light to moderate. I hope that doesn't change. I feel fortunate to be at Mayo clinic. Theres a host of new treatments. One is newer and would be given in place of R CHOP and promises fewer side effects. The choice would be mine. I think the mood swings come from all the uncertainty which I guess I had better get used to. Thanks again. Hope all is well for you.

lisam61
Posts: 12
Joined: May 2009

Hi I just was wondering how you are doing, I read your post my husband has tcell lymphoma also and is on chop this is his 2nd treatment in 2 weeks he'll get his 3rd and re-scan him he is supposed to have Ontak but he must be in remission. I'd like to know if you are doing better he has blisters in his mouth and can hardly eat or swallow he's lost a lot of weight doesn't have an appetite they've given him tons of stuff to take but nothing seems to work. We need to pray that someone finally comes up with something for this monster. I pray for everyone on this site. Stay well. Lisa

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I am doing OK and hope that your husband will do well. I have NHL follicular which I believe is b cell but did 6 rounds of R CHOP. I finished that at the end of January. A PET scan before treatment 3 showed complete remission but still had to complete all 6. I had the ontak as part of a clinical trial a year ago. I guess if your Husband is going to have it the trials must be done? I had a really sore mouth with the R CHOP also. I never got any actual sores but my mouth was so tender that even the bubbles in pop hurt and it was difficult to eat. It was advised I use a baking soda toothpaste and do rinses with warm water, baking soda ans salt a couple times a day. You probably already know these things but I think they helped because I didn't get any actual sores. My mouth is a lot better 6 weeks after finishing but not completely back to normal yet. A recent trip to the Dentist enlightened me to that fact that chemo is hard on the salivary glands and I do notice mouth dryness. I am now scheduled to go back for a follow up PET scan tomorrow 3-9-10 and I am very anxious. I'll post how it turns out. Wish me luck and all the best to you and your husband. Mary

lisam61
Posts: 12
Joined: May 2009

Hi I was wondering how you are doing I pray that all came out well. My husband just was released from the hospital after being there for 5 days, with very low blood cell count, they did a transfusion and they also were able to heal the sore on his tongue with antibiotics, they found that after doing an endoscopy he has an ulcer in the back of his throat which is causing misery. So we have to see an ENT, his next round of chemo is Friday and tomorrow he goes for another blood test. This is so hard on everyone I stayed in the hospital with him he had very high fevers 103.2 but finally it came down after the transfusion. The Neulasta shots give him so much bone pain but I guess it will keep him out of the hospital. I was wondering did you have any reactions to the Ontak and where was it done. I understand Ontak does not make you as sick as chemo is that true? You take care and God bless you we are praying for you. Lisa

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I was looking to see how everything came out but did not see anything. Hope all went well. john

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