Follicular Lymphoma - Rutuxin first line treatment?

amybesunder

My story in a nutshell - I am 35. I felt and ignored a lump in my groin area for four or five months, assuming it was a sports related bump. Went to my PCP, who sent me to get a sonogram, an MRI, a needle biopsy and then the real deal - surgical biopsy. Violà! Follicular Lymphoma - Stage II, Grade 1. Oddly enough, never had any other symptoms. Felt great.

My oncologist has recommended either watch and wait or Rutuxin (4 treatments for a month, wait six months then four treatments and so forth). So what to do? I am getting a second opinion as well on 9/9 at the Seattle Cancer Care Alliance.

The idea of watch and wait seems completely unsatisfying but I know it is common practice. Still I am leaning towards Rutuxin. Has anyone done watch and wait and if so, what tricks did you use for keeping your mind off the fact that you were actually waiting for your cancer to get active?

Thanks,
Amy

slickwilly

amybesunder
Hi Amy. First of all I am sorry that your dealing with cancer. I had B-cell Lymphoma in my face 6 years ago. Another case of a bump and a lack of other symptoms that made any sense. I went through chop+rituxin and 25 radiation treatments. A second opinion is always the right way to go. I am not a watch and wait type of person because it reminds me of Pearl Harbor. Nothing might happen or things can get completly out of control. The big question here is did the Oncologist get everything with the surgical biopsy? I had a mass removed from my face during a three hour operation. The biopsy was inconclusive. Things looked good for a month until the cancer entered my facial nerves and spread along the bones. I spent the next 8 months hoping I survived. Cancer treatment is always a personal decision and learning about your type of cancer and treatments is the key to making those decisions. I was also involved in a professional sport so I tend to go into things with a get it done with attitude. Best of luck. Slickwilly

merrywinner

Dear Amy
I am sorry to here about your diagnosis. However much can be done. I also have follicular lymphoma grade 1 stage 4a. The watch and wait is a standard of treatment for grade 1 because it is so slow growing. The more aggressive stages respond more readily to treatment because the drugs need to hit those cells when they are active. It was recommended that I do watch and wait for this reason. However you don't do alot of waiting. I was watched very closely, and yes this was after a second opinion. You would be seen at 3 month intervals and treatment would begin at the first sign of any changes. The key thing to remember is grade 1 is so slow that the chance of it rapidly getting out of control are very remote. I have heard of cases where people went a long time without needing anything. So my suggestion would be to consider all of your options along with your MD and know that the treatments are there when and if you need them. I personally made it 6 months and then had to have treatment. I was lucky enough to qualify for a clinical trial which produced a 90% remission. Had I already had any treatment I would not have qualified for this trial. It used 2 mononuclear antibodies and I felt fine. Now I have to wait and see how long it will hold. I finished the trial in March 2009 went back for a recheck in July and all was well. Now I will go again in October so really its all watching and waiting. Best of luck to you.

Pet Lover

merrywinner said:

Dear Amy
I am sorry to here about your diagnosis. However much can be done. I also have follicular lymphoma grade 1 stage 4a. The watch and wait is a standard of treatment for grade 1 because it is so slow growing. The more aggressive stages respond more readily to treatment because the drugs need to hit those cells when they are active. It was recommended that I do watch and wait for this reason. However you don't do alot of waiting. I was watched very closely, and yes this was after a second opinion. You would be seen at 3 month intervals and treatment would begin at the first sign of any changes. The key thing to remember is grade 1 is so slow that the chance of it rapidly getting out of control are very remote. I have heard of cases where people went a long time without needing anything. So my suggestion would be to consider all of your options along with your MD and know that the treatments are there when and if you need them. I personally made it 6 months and then had to have treatment. I was lucky enough to qualify for a clinical trial which produced a 90% remission. Had I already had any treatment I would not have qualified for this trial. It used 2 mononuclear antibodies and I felt fine. Now I have to wait and see how long it will hold. I finished the trial in March 2009 went back for a recheck in July and all was well. Now I will go again in October so really its all watching and waiting. Best of luck to you.

Non Hodgkins Lymphoma
Hi Amy,
I was diagnosed with Non Hodgkins Lymphoma Follicular Center cell Type-Grade 2. In June 2007, I felt a swelling under my left arm. Put off calling Dr. as I had an appt. already for July. By the time I went to my Dr., I had a pea size lump in my neck. He sent me to a Nose Throat Dr. Had to wait until August. He sent me for a catscan and blood work, didn't find anything and he gave me an antibiote. I already had an appt. with my lung Specialist for emphsema. I still had the lump in my neck, plus 5 more pea size lumps in the neck area and swelling under the arm and also, a lump in the groin. No Pain anywhere. I also had lost 25 pounds. (I was only 125 pounds to begin with.)My lung Specialist put me in the hospital for a Biopsy. On Oct. 17th, after removing lympnodes from my underarm, I was given my diagnoses. I immediately made an appt. with an Oncologist at M.D. Anderson Cancer Center in Orl. Fl., that was highly recommended to me. I was put on Chemotherapy, the treatment called R-Chop, which is a combination of 5 different chemo drugs. (No Radiation)I had 7 eight hour treatments. One every 3 weeks.I was driven to my treatments and then later picked up. I didn't want anyone to have to sit there all day with me. I was able to walk out of every treatment. My prayer during my treatments was that I would be able to stay in my home-alone and take care of myself and my pets. I did have a lot of help with food and chores, but was able to not have to have anyone stay 24 hours a day. I am a widow and use to living alone. I have now been cancer Free for 18 months. I go every 3 months for a check-up.(Yes, I did go bald, wore cute wigs and now I happily have a full head of medium length hair.) I hope I have helped. If I were you, I would go to a well known Cancer center for 2nd opinions. The Drs.at the cancer centers confer with each other, so you have a lot of opinions, not just one. Be strong and have faith. Sincerely, Alice

Evaline

Follicular Lymphoma
Hi Amy,

I posted my experience with Rituxin under Follicular Lymphoma, the first one that comes up.
I posted it today. This topic is on twice. Please let us know what you decide.

Evaline

lees1953

treatment
Hi Amy,

I am wondering if you decided to do treatment; I am in a quandry as I was diagnosed follicular Stage IV in April, bone marrow involvement. Two scan later the nodes show sign of increase each time though minimal. At onc visit last week, I reported I was having symptoms, extreme fatigue, always hot, not flashes, just uncomfortably hot while others were cool or cold..and itching scalp. I go back Oct 5 as he drew blood for thyroid and he said he would leave it up to me if I wanted to start Rituxin treatments.

I am not too comfortable with WW either; but don't want to unnessarily but foreign things in my body.

just searching for answers...what symptoms did you have? what was your node measurement?

any info will help, thanks, Sheila

amybesunder

lees1953 said:

treatment
Hi Amy,

I am wondering if you decided to do treatment; I am in a quandry as I was diagnosed follicular Stage IV in April, bone marrow involvement. Two scan later the nodes show sign of increase each time though minimal. At onc visit last week, I reported I was having symptoms, extreme fatigue, always hot, not flashes, just uncomfortably hot while others were cool or cold..and itching scalp. I go back Oct 5 as he drew blood for thyroid and he said he would leave it up to me if I wanted to start Rituxin treatments.

I am not too comfortable with WW either; but don't want to unnessarily but foreign things in my body.

just searching for answers...what symptoms did you have? what was your node measurement?

any info will help, thanks, Sheila

treatment
Hi Sheila,

I went with Watch and Wait. After two opinions both suggesting this was my best option, I decided to give it a try. Both dr.'s said that I have to look in terms of a long life span and each day/month not needing a treatment is a good thing. There was some talk about starting a treatment now that might conflict with treatments down the line and since treatments are developing fast, I should keep my options open.

I had no symptoms outside of the enlarged node and my nodes are very small -1.1 cm and 1.4 cm.

Sheila let me know what you decide. If I had symptoms, I think I would have gone with Rituxin.

Amy

amybesunder

Evaline said:

Follicular Lymphoma
Hi Amy,

I posted my experience with Rituxin under Follicular Lymphoma, the first one that comes up.
I posted it today. This topic is on twice. Please let us know what you decide.

Evaline

Thank you
Thank you Evaline. I read your post. Congrats on your success!

lees1953

amybesunder said:

treatment
Hi Sheila,

I went with Watch and Wait. After two opinions both suggesting this was my best option, I decided to give it a try. Both dr.'s said that I have to look in terms of a long life span and each day/month not needing a treatment is a good thing. There was some talk about starting a treatment now that might conflict with treatments down the line and since treatments are developing fast, I should keep my options open.

I had no symptoms outside of the enlarged node and my nodes are very small -1.1 cm and 1.4 cm.

Sheila let me know what you decide. If I had symptoms, I think I would have gone with Rituxin.

Amy

still trying to decide
I went back to reread my scans I have several nodes between 2-3 cm; one of the phrases that jumped out at me on the after surgery scan in June...extensive retroperitoneal adenopathy.
additionally I have a a mesentric soft tissue mass measuring 2.9 x 2.4 cm located at the aortic bifurcation which is malignant.

I am 56 and with each scan showing some growth I have to wonder, how long do we wait?

the fatigue is my main issue; as I woke this morning my first thought was please don't let it be time to get up! that after sleeping 8.5 hours...
and I just keep gaining weight, in my abdomen. I am not particularly vain person, but it is starting to get gross too old to be pregnant or even look like it...lol

Hard to keep the smile on my face and pretend perky attitude; so you think if it is affecting your personality it is time to do something.

thanks for your input, God bless and let me know what you do as well, Sheila

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