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Watchful Waiting Treatment for NHL

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

I was diagnosed Sept. '09 with Stage IV Follicular B cell NHL. 8 months later, due to no visible symptoms, we're following Watchful Waiting treatment. Went to Moffitt Cancer Center in Tampa for a second diagnosis and they agreed with my local Oncologist. I'm very happy with not having Chemo yet, but has anyone else done this and if so, how long before treatment did you wait? Have blood work and CT or PET scans every 3 months - thanks.

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi cookingirl,
I was diagnosed around the same time as you in Aug of 09. I was stage 3 follicular NHL, and did watch and wait for 6 months because I did not have any of the "B" symptoms (night sweats, weight loss, fatigue). My last PET in Feb showed increased activity in a spot on my hip, so my onc felt it was time to take action. I had a month of 1 week treatments of Rituxan which is not chemo. I was a little unsure of the whole watch & wait thing because I felt as though I wasn't being proactive. In hindsight I think it was a good decision for me, it gave me time to wrap my head around this whole thing, do my research and come to terms with the fact that at some point I probably would have to have some sort of treatment. I was better prepared and had the knowledge to make the decision to go ahead with treatment when the time came. As you are being monitored so closely and have had two opinions that this is the course you should take, I would be comfortable with the watch & wait, **BUT** if you start to feel anything changing (night sweats, weight loss, pain) DON'T wait for your next scan, call your onc right away. Good Luck!! I hope this helps. Cat

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

Cat - thank you SO much - at long last I've met someone who was in the Watchful Waiting! Your answer was very helpful. I'm waiting at this point to hear from my Oncologist this afternoon regarding my CT scan last Friday - he called but I was out, not expecting to hear from him until Friday office visit. Sounds as though something's going on so nervous to hear what he says. I've had 5 very painful sessions the past 3 weeks of lower abdominal pain worse than childbirth and severe diarrhea and backpain accompaning it. I did tell him last week at my appt. and he ordered the scan.I have a 4.2 cm tumor in my abdomen just behind my small intestine - too deep to remove it by surgery. They were waiting for it to reach 5.0 cm before starting Chemo. It could be my waiting time is over - I'll let you know when I hear. When we talked about treatments, he told me I must do the CHOP chemo BEFORE having Rituxan - I was hoping the Rituxan would do the trick as it did for you. I dread the thought of losing my hair and the O part of CHOP does that, he says. Are you in full remission now?

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi Cook,
I had the CHOP last year from March to July. I was cancer free in June and Sept. Haven't had a scan since. Yes, you loose your hair but I never got sick, just weak after the 5th treatment. I feel great now. I went back to teaching in Sept after my last CHOP treatment on July 6, 09. Good luck to you and God bless you. I am available to talk anytime. I had 3A follicular lymphoma. You can write me at my work address, pickensj@pcsb.org. They have been treating lymphoma with the CHOP for 25 years or more I think. Joanie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi, Just saw your picture. You were blessed with good genes:) Hope all is well with you. Joanie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Thought I would tell you since I also HAD NHL stage 3A that a Dr. at the University oof Texas has developed something to keep us in remission longer. If you write me at my work address pickensj@pcsb.org I will try to forward it to you if you are interested. Joanie

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Cookin & Joanie! I won't know if my treatment worked until July when I'm scheduled for a PET. I haven't had any chemo so I have no advice as to the treatment or side effects, but there are so many that have and can give good information (like you Joanie!). I'm feeling good and recently realized that I'm not having those night sweats anymore! I'm cautiously optimistic and hoping the scan will have great news. I'll keep you posted! Hope you are both doing well too. Cat

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I think it is a great sign that you are not having night sweats. Something is working. I am glad you are feeling well. I feel well also and I feel so blessed. I have a little cold and half of my class is sneezing and blowing their nose. I'll be bringing out the antibacterial wipes for them to clean thier desks today. Have a great day and God bless you

kelly02
Posts: 8
Joined: May 2010

I was not sure how to post something. I am new to all of this. I am 43 and was diagnosed with Follicular lymphoma. Stage IV phase 1 but I also have it in my bone marrow. I am doing the watch and wait method at this point. I am so glad I found all you you. I felt very alone. I am not sure if I am doing the right thing, but after reading your stores I feel much better. However I do have one question. I am told there is no cure? It will go in remission but will return, and they information i read gives a time of 10 to 15 years. I am so confused right now not sure if I am coming or going. I know you can't have bad thoughts but each day i wonder if I am going to be able to one day see my grandchildren. Please tell me i am not crazy.....

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

No you are not crazy. It's a shocking and scary thing to suddenly find yourself with this diagnosis that you know nothing about. Everyone here has their story and can relate to the fears and confusion. It's a learn as you go journey and over time you will become more comfortable with things. There's lots to learn but try not to overwhelm yourself. With regard to finding out there is no cure...I remember that day and the helplessness I felt. After finding an MD that I felt comfortable with he was able to explain to me that although they do not have a cure he has a whole arsenal of weapons to get me in remission and keep me there as long as possible and if it returns he'll reach into his arsenal and use another. I also had non Hodgkin's follicular lymphoma stage iv grade 1-2 with 50% bone marrow involvement. I was diagnosed in July,2008 so almost 2 years ago. I did watch and wait for a short time. My lymphoma presented with a lump in my neck and it was getting bigger so it was decided to treat. There are many options for treatment and if and when that time comes your MD will lay them out for you based on your unique situation. And remember that new things are being researched continuously. I recently was treated with one of them. As of the end of March I have been in complete remission and my bone marrow is clear. I won't get into treatments etc. because it gets to be too much to process all at once and everyone's case is different. I can tell you that this site has been a Godsend to me and there is no question you could ask that someone here can't answer. Please be assured that there is so much that can be done. Also as to your question of Grand kids....My daughter just had twin girls on 5-19-2010. I was there to see the whole thing. I am just a few years older then you but still a lot younger then the average age for this disease. I hope this helped in some small way. Best of luck. Mary

kelly02
Posts: 8
Joined: May 2010

thanks merrywinner for answering my questions and congratutions on your two new babys. The watch and wait. How long did you go on the watch before treatment started?

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

Because of the lump in my neck growing I only made it on watch and wait for about 4 months. I had no other symptoms prior to diagnosis other then suddenly the lump. MD figured I probably had NHL for several years because it was so widespread. I had no idea! So in my case I think I had already used up most of my watch and wait without even knowing it. Mary

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

HI Kelly02 - Like you, I'm in stage 4 NHL, follicular B cell. Mine was discovered last Aug. and because the tumor in my abdomen was 4.2 and not large enough to treat, I've been waiting for 9 months, hoping it would shrink (as it did one CT scan) and not grow. Unfortunately, it's now 12 cm and way too large not to treat ASAP. Had my port installed two days ago and look like a pick-up truck drove across my chest but I bruise easily. Will start CVP-R Chemo next week and am a bit anxious.
Went to a seminar yesterday in Titusville, FL done by Dr. Sotomoyer, head of the Lymphoma dept. at Moffitt Cancer Center in Titusville. Very informative hour and a half. Learned there is no cure, only remissions for NHL. Rituxan will be given for 8 hours on my first day of Chemo for 8 hours - second day, CVP. I tend to have lots of allergies and rashes to meds, so they're doing it very slowly to try and avoid that happening. We'll see! He said using Rituxan in combo with Chemo for the first time treatment will extend remission for 2 years longer than normal. I hope that's true. Good luck and I'll hope yours stays in watchful waiting for a longer time! Cookingirl -

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

Sorry - Moffitt Cancer Center is in Tampa, FL, not Titusville - bad mistake and a typo. I had an appt. in Oct. with Dr. Sotomoyer as a second opinion and he's very highly regarded in the field of Lymphoma so I would trust him with my life.

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