Rituxan only

mikeheadfl said:

Rituxan only
I was diagnosed in July 09, with stage 2 indolent follicular B cell NHL. I had the 4 Rituxan infusions. My nodes in my neck were back to normal for 4 months. I knew when they started to grow again. I start Chop-R for 6 treatments on Friday. I just had my power port put in. I am very uneasy at this time. My cancer is now aggresive. I am 60 years old.I am hoping for the best. Please remember that everyone responds differently. I had no side effects from the rituxan.I took 1000cc's at a time. That is 1 leter. 87% drug 13% saline. Good luck.

Rituxan
I was diagnosed with Mantle cell lymphoma in June of 08 after discovering a lump in my armpit. Through testing they also discovered some of the mantle cells in my bone marrow. Because I was pretty much symptom free we decided to take the Watch and Wait approach. My oncologist consulted with Lance Armstrong's oncologist and this is what he also recommended.

Through CAT scans over the next year more and more of my lymph nodes were showing signs of the cancer cells so in June of 09 I started taking Rituxen, 4weeks on, 4-off, then four more treatments. I had great results from the treatment that regular Cat Scans proved.

At the beginning of 2010 I started having alot of difficulty with constipation so we scheduled a colonoscopy--which I was due for anyway. Three weeks ago I received the result and they discovered that my lymph nodes through out my colon were swelling and a large mass was found in my rectum, also a result of the mantle cell. Of course my first thought was this was a death sentence for me and felt that we needed to do whatever needed to stop or remove the cancer. Mantle cell is a blood cancer that spreads through out the lymph system so it does not do much good to start removing every part of your body that is affected by it. In fact, my doctor feels that my spleen in also involved.

The puzzeling part to me is that we are continuing with the Rituxen. As of today I finished my second session and will have three more. My doctor feels that we had great results from in before and he would rather but me through these treatment before moving to something more drastic. I am to this day still relatively symptom free, I don't have night sweats and I'm definately not losing any weight!

I guess my reason for finally deciding to join a forum is that I would like to learn from others as to what point one should take more of an aggressive approach. Some of the forums I have been reading regarding mantle cell is that most people are being treated more aggressively even to the point of stem cell transplant. What symptoms were you having? Does anyone else have close to my degree of the disease and are you still on Rituxen? Before this latest development with my colon and rectum I was at a stage IV.

Thank you for listening!

mikeheadfl said:

Rituxan only
I was diagnosed in July 09, with stage 2 indolent follicular B cell NHL. I had the 4 Rituxan infusions. My nodes in my neck were back to normal for 4 months. I knew when they started to grow again. I start Chop-R for 6 treatments on Friday. I just had my power port put in. I am very uneasy at this time. My cancer is now aggresive. I am 60 years old.I am hoping for the best. Please remember that everyone responds differently. I had no side effects from the rituxan.I took 1000cc's at a time. That is 1 leter. 87% drug 13% saline. Good luck.

Rituxan only
I have a question for all of you that have had Rituxan only. If you were offered that option again (knowing what you know now) would you go with it? I know that some have had success with it and others have had reoccurances rather quickly. I have two opinions from two fine insitutions and one option is Rituxan only. The other institution said that if there is bone marrow involvement with ANY indolent lymphoma that you then need chemo and not just rituxan.( My NHL is in my bone marrow)

Also, a previous post talked about PET scans being more for the patient and that is exactly what my two doctors have said. Indolent lymphoma may not show on a PET scan but may show on CAT or MRI. They diagnosed me finally with a lymph node excision and blood work results.( as well as symptoms)I dont expect a PET scan to be used again unless they suspect tht the cancer has turned agressive which makes it visable on the PET once its active.(per my docs)

Thanks everyone and my best to you all!

onlytoday said:

Rituxan only
I have a question for all of you that have had Rituxan only. If you were offered that option again (knowing what you know now) would you go with it? I know that some have had success with it and others have had reoccurances rather quickly. I have two opinions from two fine insitutions and one option is Rituxan only. The other institution said that if there is bone marrow involvement with ANY indolent lymphoma that you then need chemo and not just rituxan.( My NHL is in my bone marrow)

Also, a previous post talked about PET scans being more for the patient and that is exactly what my two doctors have said. Indolent lymphoma may not show on a PET scan but may show on CAT or MRI. They diagnosed me finally with a lymph node excision and blood work results.( as well as symptoms)I dont expect a PET scan to be used again unless they suspect tht the cancer has turned agressive which makes it visable on the PET once its active.(per my docs)

Thanks everyone and my best to you all!

Rituxan only
I was diagnosed 11/09 with Non-Hodgkins Lymphoma, stage 1. My doctor had me do four treatments of Rituxan over one month. It seems to have caused the tumor to shrink slightly and has not gotten any bigger at this time. We are in a watch and wait mode now, I go back for another CTscan in four months. Chemo scares me so if he told me I could take Rituxan indefinitely, I would.

How do you all cope with the fear and the unknown? Some nights I don't sleep at all. I need some hints.
Thanks

dixiegirl said:

Rituxan Only
Hi Cat.

My name is Beth and I have recently been doing Rituxan only for my 3rd recurrance. When I started this cancer trip I was stage 1 low grade Malt lymphoma. At the time I did CVP+Rituxan with rituxan maintenance for a while. My relapse was in my left hip area and we did watch and wait for about 9 months, then treated that with radiation. In January of this year I had a drenching nightsweat and my doc sent me for a pet scan. I am now stage 3 follicular lymphoma. I did 4 weeks of rituxan only and getting ready to start maintenance April 1st, with another pet scan coming up in June to see if it's working.

My big problem now is I have a "insufficiency fracture" in my hip/pelvis area. My onc says it's caused from my radiation treatments in 2007, where it weakened the bone. This has been hard for me and it REALLY stinks when you can't walk very well. I am 45 years old and walk like a little old woman. It'll heal on it's own over time, but talk about being impatient! When I go back in april he's going to add reclast to my treatment and I hope it helps speed up the healing LOL. Chemo threw me into early menopause also and this is something I guess that goes along with it.

Trust your doc, but more importantly trust yourself! I found all 3 of my occurances basically. I found the lumps the first time, told my doc I just felt like I did before with the second relapse and found it by pet scan. This time the nightsweat and weightloss was all I needed. My blood work has all been good, but I am finding with time that I know what my body is telling me.

I hope you get great results, and pray it's not in your bones, as I fear that is maybe what's happening with my hip. He mentioned possibly sending me for another bone scan and mri soon to check my hip, hopefully sooner than later I'd like to know this pain will go away soon. Heating pad and aleve are about the only things that help and the occasional pain pill, but summer is coming and with menopause so does the hot flashes so I am sure the heat is going to be an irritant

Take care,
Beth

CVP, RITUXAN
hello dixiegirl, i have a question about your cvp and rituxan treatment you first had. i also had the same treatment for 7 rounds ending last feb. the question is, did you loose your hair and get sick from the ttreatment? i did not. the only thing i felt was tired and ached alot in my legs. i will start 4 rituxan treatments the end of this month for maintance. my follicular lymphoma is in my abdomen and is almost gone. the word "almost" concerns me. was yours completely gone? good luck to you, take care. bk1950

catwink22 said:

Thanks
Thanks for your post Ivraider, because when I go for my scan in July if the spot on my hip has not gone down far enough in intensity my onc mentioned hitting it with radiation. I kind of gulped and figured I'd cross that bridge if and when I get there. It's definitely a reassurance to hear that it worked for you.

Thanks too Joanie for your concern on my walking, I am doing much better only a slight limp on certain days that I think I do too much.

Please help, info needed

Hello,My 85 year old grandmother was recently diagnosed with Diffuse Large B Cell Lymphoma.  She is elderly and weak so chemo is out of the question.  We were given the option of Rituxan only treatment. Although the side effects are very different then with chemo and seemingly less severe we are still very concerned about them.  I was hoping for some feedback from anyone who has had Retuxan only treatment about the side effects.  What you experienced, how bad they were and how the risks were presented to you when you were given this option.  We are well aware that this will not be a full cure for her but the risks and side effects have been explained to us by multiple doctors who all make them sound so different I would like some information from People who have actually been through it before making a final decision.  Thank you so much, Jillian

Jilliankay said:

Please help, info needed

Hello,My 85 year old grandmother was recently diagnosed with Diffuse Large B Cell Lymphoma.  She is elderly and weak so chemo is out of the question.  We were given the option of Rituxan only treatment. Although the side effects are very different then with chemo and seemingly less severe we are still very concerned about them.  I was hoping for some feedback from anyone who has had Retuxan only treatment about the side effects.  What you experienced, how bad they were and how the risks were presented to you when you were given this option.  We are well aware that this will not be a full cure for her but the risks and side effects have been explained to us by multiple doctors who all make them sound so different I would like some information from People who have actually been through it before making a final decision.  Thank you so much, Jillian

Jillian

Hey Jillian, I am no expert by any means, brand new here myself but I just took my fourth rituxan (3 with chemo , one without.) and I think rituxan alone is fairly safe with almost no side effects and does the job for awhile at least. I am not sure about her age and rituxan if that makes any difference. Curious to know. Good luck, Wish your Grandmother the best !