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Watch & Wait for low grade?

poni2
Posts: 1
Joined: Feb 2005

I have just recently been diagnosed with b-cell low grade lymphoma. After the gazillion tests, they found no other cancer except what they removed. I have been reading a lot about alternate treatments for this as opposed to Chemo & Radiation. I feel they are jump**** the gun so to speak in ordering such aggresive therapy such as chemo & Radiation. Anybody have an experience with this particular type of cancer? Too much information for me at one time. Would like to talk with someone in simalar situation about treatment. Thanks!

jo98
Posts: 3
Joined: Feb 2002

poni2 Hi- I have had this cancer for 7 years.I did the watch & Wait thing for 6years .I also did
yoga,massage,and medical accupuncture.I drink green tea and find red meat difficult to digest.I will say the yoga helps to keep the lymph system flowing.The massage help detox the body.The medical accupunture was done by a Medical Doctor. I found it got my body balanced. All 3 of these modes have polonged and helped me greatly.I am just now finishing a treatment with rituxan,monoclonal antibody.It covers the B-cells only and they can't get the protien to live.This is second round and I could tell the difference in 1 treatment.I was treated 6 months ago with the same drug. In hopes to knock back swelling in my throat and to help my autoimmune system which is plaged with 3 types of arthritis.-It doesn't damage other cells like hair,digestions just B-cells.I am 52. Please write to me glad to help! jo

harleygirl
Posts: 1
Joined: Mar 2005

i was just diagnosed with follicular lymphoma and had a bone marrow test and am have my scan today the doctor as of right know thinks it will be a watch and wait thing unless tests are bad i am really scared i have no symptoms like night sweats weight loss fever so doctor says i am lucky please write me thanks

sweetda
Posts: 6
Joined: Mar 2005

Hi Harleygirl, I was diagnosed a year ago with NHL in my bone marrow and spleen. It was in stage 4. WE did chemo for 6 months after my spleen was removed and I just finished my first round of Rituxan. Have to take Rituxan for 2 years every 6 months. Please write if you'd like, swdeborah@aol.com

sdevilbiss
Posts: 41
Joined: Sep 2002

I was diagnosed with low grade NHL and the local oncologist wanted to treat agressively. I chose to go to a cancer hospital for a 2nd opinion. I have a hematology oncologist. He takes the wait and see approach. Says that too early agressive treatment could mean ca cells become immune to chemo drugs. So when I really need the chemo it wont be as effective. That was in 1998 and am still waiting and watching with very little growth. No treatment as of yet. I keep a positive attitude, try to eat healthy, and am followed by oncologist every 3 to 6 months depending on how things are going. I don't dwell on my cancer but it does stay in the back of my mind. Check with your doc. Best wishes.

kfarley
Posts: 5
Joined: Feb 2011

Hi
I am glad to hear that youhave had not growth in 12 years. That is incredible & I hope I am in the same boat. I was diagnosed 8/23/10 (I bet we all remember our diagnosis day). I, also, was offered radiation to my tumor which is wrapped around my right kidney. This would have meant death to some portion (unknown how much). I got a second opinion at Stanford & it was suggested to watch & wait. It is hard waiting. I have changed my diet, lost 13 lbs (back to my high school weight), work, & play soccer at age 57. I am hoping for cure....??? How often did you have scans to check the growth of your tumor? I plan to ask my doctor if there is some way to avoid every 6 month CT scans in order to avoid the radiation exposure. Do you mind me asking how old you are?

I only now noticed that this was posted in 2005. I hope you are well and that you are stil checking participating in this site.
Thank you
Kathy

summit
Posts: 1
Joined: Aug 2006

I ALSO HAVE B CELL LOW GRADE LYMPHOMA STAGE 1 AND HAVE BEEN WAITING FOR 2 YEARS NOW THE LAST TIME I HAD A CAT SCAN WAS IN JULY 06 SMALL LYMPH NODEES IN CHEST SWOLLEN A LITTLE DR. SAID WAIT TILL DEC AND ANOTHER SCAN AND MAYBE 6WEEKS OF RITUXIN WHAT YOU THINK

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

JUST WONDERING IF YOU ARE STILL WAITING AND WATCHING. I CHECK THIS SITE OFTEN AND NOTICE A LOT OF PEOPLE DO NOT POST ANY RESULTS. I AM JUST CURIOUS SINCE I TOO AM ON THE WAIT AND WATCH THING.

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi - I posted about this a month ago - diagnosed with NHL B cell follicular stage 4 last August. Tumor in abdomen was at 4.2 cm - they did Watchful waiting until it grew to 5.0 when chemo was suggested. No symptoms at all - no sweats, weight loss, nothing. Until last week a CT showed it's jumped quickly to 12 cm. Port was installed last week and today I started R-CVP treament. Oncologist has high hopes for Rituxan shrinking it quickly. They did 6 hours today of all 4, putting in slowly to prevent rashes, shakes, etc. - no reactions yet and feel fine. Tomorrow back for another 4 hours of all to finish up. Usually symptoms come 36 - 48 hrs. after infusions so we'll see what happens this weekend - probably not as good. I'll have blood checks every week - 6 treatemtns 21 days apart with no travel until late October - cancelled lots of summer trips. Just hoping to see shrinkage since surgery is not possible because of the location of the mass behnd my small intestine interwined with blood vessels. Have a great support system of friends and family and a positive attitude - hope that and lots of prayers see me through! Good luck to each of you -

kelly02
Posts: 8
Joined: May 2010

I was diagnosed in March and started the watch and wait still doing it. I go have blood work every two weeks. my levels have increased but not to much. I go in July for a second Pet Scan to match my levels. i will keep you posted.

kelly

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I was on the watch and wait plan as well. I am not to sure about that kind of approach. I was a stage 2 with no symtoms when i started. Now I am stage 4 still no b symtoms. They decided to start chemo next week. I know they are the experts, but it still makes me wonder about that watch and wait plan. What stage are you in? Do you have any of the b symtoms? Is yours follicular lymphoma? It is scary to be sure. Especially when you get on the computer and start looking up how common this stuff really is.

kelly02
Posts: 8
Joined: May 2010

i am a stage 4 phase 1 not sure of the B symtoms? not sure i heard of that. I can tell you its in my bone marrow. mine is follicular. im with you in reagrds to scared but we will get through this. i read stories about people having this and going 10 years without it coming back. i go every two weeks to have my blood checked and in July i have another Pet Scan to measure my levels from April when i had my fast Pet scan. i will talk anytime you need take care and good luck with your chemo

kelly

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

B-symtoms are fever,night sweats and temperature. I do not have them either. Where are your enlarged nodes located? Mine are in my abdomen. just wonder why if you are in stage 4 they are not starting some kind of chemo. I am sure they know what they are doing. John

kelly02
Posts: 8
Joined: May 2010

no B symtoms. mine are in my neck arms cross my chest and spline. im thinking they will start chemo next month not sure why just something tells me that i found the one in my neck on my way to the doctors for my yearly check up after my mamogram thats when they found the rest. i had 5 differnet opinions. all but 4 wanted to start treatment one even said i would only have 5 years.. i was sick then i went to Hershey and the doctors there said watch and wait.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Kelly it is definite you need those 2nd and 3rd opinions. Make sure you have a onc you can really trust and is up on the latest treatments. You said its in your bone marrow so that does make it stage 4. Thats where I am as well. try not to get discouraged. It is rough believe me I know that. You really feel as though you are alone. I know the feeling all to well. Don't be afraid to ask questions on here. We will help you get through this thing. They have come a long way with cancer in the past 20 years. What we have is not cureable now, but it is manageable with treatment. Indolent follicular is slow growing. John

millard
Posts: 9
Joined: Aug 2011

OK, it is good to know it is definitely not curable. Now, is it treatable in a way that may slow it down or reduce its size?

Mine is in my spleen. The jockers wanted my spleen out to do a biopsy. thats silly to me, they could do a biopsy, but
cannot put it back in!!!

I think they can diagnose it with looking at my blood under a microscope, right?

onlytoday's picture
onlytoday
Posts: 593
Joined: Jun 2010

Hi Maggie,

That is the one I have, just posted an answer to you in the micro fracture post!Didn't see this post until now.

Donna

maustin
Posts: 3
Joined: Jan 2011

i was diagnosed with b-cell marginal zone NHL 18 months ago after two tumors were removed because they thought they were lypomas. After a PET/ct showed I had 10 other tumors I was stage 3. Within 3 months the 2 tumors that were removed were regrowing - one was 7x11cm, the other was 4x7cm. It didn't seem like this was an indolent form of NHL. I started acupuncture 6 weeks before my 2nd PET scan. If the tumors were still growing my Oncologist wanted me to start Rituxin. After 6 weeks of acupuncture the tumors had reduced in size and SUV rates were dropping. I continued on just acupuncture and 6 months later the PET scan showed I was cancer free, still had the marker in my bloodwork. I continue with acupuncture today, weather it is stress relief or something else, I have had amazing results. I know it will return but please consider acupuncture.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I used acupuncture for side effects of chemo and got wonderful results too. I think I will pass on this message to my doc who does it.

Congratulations!

Beth

kfarley
Posts: 5
Joined: Feb 2011

Hi
I think I will give it a try. How did you choose an accupuncturist?
Kathy

kfarley
Posts: 5
Joined: Feb 2011

Accupuncture can't hurt & it seems to have helped you. How did you go about chosing an accupuncturist? I live in Hawaii & there are a lot of accupuncturists. I went to one for carpal tunnel a few years ago but I was not sure it did much & it cost $75 a session. He was from China. I've gone to a locally trained practitioner & I really didn't have any faith in her. She seemed preoccupied. Did not feel that she had a sense of how to treat illness. Any words of wisdom are appreciated.
Kathy

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

The gal who did my acupuncture is a chiropractor that I see. It's a family office. The dad does my chiropractic work and she does more of the holistic side with acupuncture, diet etc.

Just keep searching till you find someone you like.

good luck on the search, mine was worth it.

Take care,
Beth

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hi: I have non-hodgkins follicular low grade Lymphoma since 04. I had surgery twice, the first time in 04, and 22 radiation treatments. Then I was home free for almost 5 years , where I thought I had beat it. One week from 5 years. But I knew it was back.
Well it came back with a vengence. I had been diagnosed with stage 4. It was in my bone marrow. I did 8 chemo treatments R-Chop and then a radioimmuntherapy called Zevalin that was in O9. I just had a cat scan in December 1, it showed remission. So we will see.
It is just funny when you have pain elsewhere you think it is back. I do have some pain in my leg muscles. Sometimes in my arms. But that is it.
Hope you are doing ok. I really trust my dr. Hilde

Keith1961
Posts: 10
Joined: Jun 2011

I have follicular lymphoma in my small intestine. Stage 1 Grade 1. I was just advised by the Stanford Cancer Center to take the "watch and wait" approach.

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