Advice for those on the watch-and-wait

Physical Health Cancer
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I just caught a recent post by a new user about his FL dx and the fact that he was going into watch-and-wait mode. We've discussed this before here now and again, the pros and cons of it, but I'm curious to hear from people who've now been on it for some time, what advice they might have for others.

I've seen opinions here on watch-and-wait that range from the positive (seeing it as a new lease on life) to the negative (waiting around to start dying). So let's think optimistically- but realistically- in imagining ways to re-think watch and wait. The advice offered in the first response here is a great start.

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Hi Ross-First-congrats on being named monitor for the group. You seem quite knowlegable, positive, and you write well!
I have responded to the Watch and Wait pronogsis question before, but I am happy to write again as I apparently have a great attitude, or so I am told, and hope that my positive thinking will help someone else.
I was officially diagnosed in Jan 2007, at age 59, but had figured out the lump(s) on my neck indicated lymphoma. I think that my discovering that for myself, and having lots of time before the official diagnosis, gae me time to deal, and learn about lymphoma. I also decided that I would be positive, and that being positive was a choice. I decided that since we are all dying....I know that sounds negative, but it is true, that not to be in denial about immortality was crucial, and that each day brings something new. I feel rather lucky, in as I have lived my life, with no regrets, and have accepted that we just don't ever know what will happen until it does. Instead of living with what might happen, I live in the day. I prepare myself for each Dr. visit, and now that I am in treatment, find it ain't so bad. My treatment was precipated by a bee sting, May 2010, which I believe put me in a lymph node crisis. My case was presented at a conferance, and my Dr. said the other Drs. laughed at my theory. I said-well! I'm the patient, and it's my body, and what explanation do they have!!! There was no other. My lymph nodes swelled to the point where I looked like Shrek, and then I began bleeding into my neck tissues, and turned purple. I felt fine! although my Dr. told me later they he thought they almost lost me. I just looked terrible. I watched my dear brother diagnosed in stage four lung, and he died on my 61st birthday, 8 mos. later. My 96 year old mother does not know about my condition and subsequent treatment. She does not need to know....My dear brother was in denial the whole time, devistated by the diagnosis, and instead of 'enjoying' his time, was angry and bitter, and I vowed not to be like that. He wore out everyone around him.
I find that being up front about my lymphoma is good, and that people still have a picture of 15 hour vomiting marathons, with a ashen faced skeletal body wrapped in blankets, with a babushka wrap on the head.
People tell me -oh you are so strong. I don't think so...I think I am just realistic.
I hope that maybe I have given someone else some positive energy to get through their situation. Regardless. We choose our attitude. I believe that. I am not a particulary religioius person, but my Judaic roots call to me and it helps.
I hope that anyone reading this gets me...and my attitude. Adam Lambert is my hero and I think of him singing ..."and I'm doing me up in my black guyliner..." Just do it I say. Take chances. You will surprise yourself with how wonderful life can be with the right mindset.
Prayers for all of you. Geri
Lymphoma, outer margins, stage three. In treatment after over 3 years of watch and wait. Sry to be so long winded.

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Geri-
Thanks for this sensational post. Some comments:

"I decided that since we are all dying....I know that sounds negative, but it is true, that not to be in denial about immortality was crucial."

I don't think there's anything negative about this statement. A mourning woman asks Nate, the older brother on my favorite TV show of all time, HBO's Six Feet Under, why do we have to die, and he answered her, "To make life worth living."

"The other Drs. laughed at my [bee sting] theory"

Typical elitism on the part of the medical community, and arrogance to boot - since, as you point out, they can't tell you either. It'd be nicer if they had an open mind about it.

"I find that being up front about my lymphoma is good, and that people still have a picture of 15 hour vomiting marathons, with a ashen faced skeletal body wrapped in blankets, with a babushka wrap on the head."

The cancer stigma is very real, very stupid, very misplaced. I love your decision to be up front about it!

Thanks so much for contributing to this thread!

Ross
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awwwweee blush blush :)
I told my Dr. I would be happy to talk to his group! He laughed and said,I'd probably change their collective minds.
I adored Six Feet Under also.
I hope that someone reading this, gets a smile, keeps that smile in their attitude,and the next time you forget something, and someone says-oh-you just did that say-"Oh well-I have an excuse. I'm on Chemo.

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This is my first post, and I feel a bit silly because I don't feel sick. I survived an ovarian dysgerminoma when I was 12 and here I am, 37 years later and now I've been diagnosed with NH follicular lymphoma. I've opted for the "watch and wait" treatment plan. My doctor offered chemo (no radiation) but he was really supportive of my decision to wait. Who knows, by the time I become symptomatic, it might just be a little pill and walla, no cancer! Could that be wishful thinking? Thank you to all those with such positive thoughts. I enjoy reading through the blogs and thought it was time to "chime in".

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Don't feel silly-I never really had symptoms except being tired. Even now, I almost feel guilty that I don't feel so badly, with treatment. Just tired. You have the perfect atitude with the maybe by the time I'll need treatment, there will be a lil' pill. Way to think. None the less, I used my indolent time to "clean my closet" so to speak, and had housekeeper, dog walkers and thinking in place when the time came. Thank you for being brave and sharing.

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I am new to this site. Just found it while looking for more info on the latest NHL treatments. I have SLL and am in stage IV because a small amount is in the bone. No big symptoms (though would really like the weight loss one) so my treatment plan so far has been the W&W. I go for my first 3 month testing next Tues. 27th at MD Anderson. Have had what I call flare ups (tender nodes w flu like symptons) during this W&W 3 months. Saw P doc during one of them, suggested moving up follow-up, but that wouldn't change outcome. If there is spreading, it would only mean Chemo sooner. SLL is a indolent form and like most of the treatments for these slow growning incurables, you want to save your big guns for last. So W&W makes sense. That's not to say I don't have bouts of medical paranoia during flare ups, but so far I have been able to combat them (like Geri) with realistic and postive thinking. I too believe attitude plays a big part in how you adapt to all this strangeness, and adapting has always been one of my strengths (though sometimes it involves kicking and screaming) Glad to have found this site and as long as you don't mark down for poor grammar and spelling I will pipe in again!

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Welcome KBeale!
Sorry to hear about your SLL stage IV but it sounds like you’re dealing with the watch and wait well enough. Another member here just finished chemotherapy treatment for SLL and is currently doing well, he had Treanda+Rituxan.

I feel like I just read about a vaccine in clinical trials for SLL/CLL, but if I read about it it was probably in phase II trials and a long-ass ways away from doing anyone any good, although you might want to scour the clinicialtrials.gov page just in case, if interested.

At any rate, no-- no markdowns for poor grammar or spelling!

Ross

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I was presented with a variety of options upon my DX of follicular NHL stage 3, w&w..pill chemo or Heavier chemo to
try and knock it into remission, but in our no cure yet mode
I opted to go easy and see what happens, so I began the pill form of cytxan and prednazone, which has been working great for a year now, the nodes are normal, I am on maintenence dose, I go 1 x per month to pick up my scripts, get checked
and out the door. I feel doing something to keep this at bay works better for me than doing nothing and knowing it to be
active with nothing keeping it at bay. Does that make me a control freak lol? I think I have had worse issues with my
other conditions than I have had with the NHL.
Yes Ross I TOTALLY agree we all are dyeing, my thing is how we do it, I do want control of my exp. date of life, how I pass is a big deal to me. I do want to decide not to go for theorapys that are so harsh that I pass in lets a worse than sick fashion. If and when that time comes then I would rather be home, sipping tea with hospice and watching a comedy on tv than to be in a hospital and hooked up to a bag thats making me vomit every 10 minutes.

I know I got a little side tracked from just the watch and wait you asked about, my opinion to watch and wait is
I guess its like walking blindly across the street hopeing
a car doesn't come? you know one is but will you make it across before one does? thats how I view w&w

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Hi Nana,
I am glad you posted. I am curious about the pill form of the chemo. I have a port in, (not used yet) and read a little about the pill form. If they tell me things are spreading in this next check up I will probably opt for some form of treatment. Even though I am considered symptom free I still have bouts of the flu like stuff going on. The old neck nodes srunk two days after I had an MRI that used a radioactive isotope. I say it zapped them, the Doc thinks thats funny and said maybe that is a new treatment. New neck nodes (different chain) are now swollen and enlarge, but they are deeper. Anyway I am on the fence, I don't want to use up using Chemo as an option before I have to, but I also don't want it be progressing. Thats what makes this W&W hard to deal with, on good days, no problem, on bad ones, constant worry.

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Thank you Nana752003 for being Devil's Advocate. I was beginning to think we were all bunch of Pollyannas :)BElieve me, I am not one, and KBeale, I had been getting surges of anxiety before every checkup. Especially those bariuim scans. I generally felt like I was coming down with something...and I had a husky voice most of the time. and t-i-r-e-d. Now that I am in treatment, I actually feel more empowered-as you said Nana, in control and DOING something. When one is indolent, that car coming down the street is in neutral, and once in a while, goes down a slight incline. When you need treatment-you will know it KBeale. During my W&W, my hemoglobin would dip, altho the nodes remained mostly the same size, just minut enlargements. I had this drama lymphnode crisis which put me right into treatment. I'm not sorry. But I am also not sorry I W&W-ed.I think I made up a word there Anyway. we are all different, and even if we had the same exact form of the Big L., and stuff, we would still be different. Continue to be strong, because it gives me strenght as well.

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Hi KBeale
yes I started cytoxan 5 pills with the prednazone every 2 weeks and now I am on maintenence dose of 4 pills with 2 preds once a month. So far so good, my lympnodes are normal size, I have envolvement in chest...abdomen,,groin area down my legs, so there no no zaps lol for me.
Being able to take the pill form at home is and was a sweet option for me as at least I was at home doing it which for me
is a big deal.

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There is a lot to be said as far as everyone being in their
own control beit w&w or treatment, we all have our opinions, fears etc. and age has alot to do with it. If I was alot younger of course my opinion would be alot different, but at
55 theres alot to be said for just opting with my present opinions.
Another words there it is an overwhelming task in the very beginning to just adjust to the idea of having this so in that aspect w&w is not bad as it gives you time to make decisions and get use to the ideas and or learn before
your treatment.
My theorapist calls it a cronic cancer...guess thats what
some are lableing it (giggles).

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Thanks Nana for the pill info. My retests are next Tues. then the following Mon. meet with the doc. You are so right about the age issue, (I think 55 is young, my age) so that is one of the reasons I opted for the W&W, I figured if I could only do Chemo 2 or 3 times, (read that) and this is incurable, and I'm around for a while (fingers crossed) then I'd wait as long as I could, butttt the waiting has been a pain in the butttt, mainly because of the flare ups and feeling that I am not doing anything pro active. But you are right, it did buy me more time to digest the whole situation which was hard to do during all that testing in the beginning. I try to not allow all of this to be my main focus, and normally it isn't as long as I stay busy. Idle minds give rise to worry for sure!

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Hi KBeale

Glad I could help in some small way. BUT PLEASE make sure you read Ross support section on second opinions and DX's
as it is the most important info you will recieve hon...take the time. If unsure how to navigate please just message Ross and he will direct you.
You can begin a seperate post also as to keep us informed as to how you are doing, we enjoy hearing it.

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Will read. Md Anderson is my second opinion. First DX was diffused large B cell, this after several months of going to Primary care doctor, DX was Mono 1 year ago this month. Nodes stayed inflamed, so was sent to Allergist, 12 vials of blood work, allergy skin tests, results neg, also no sign of Leukemia, I asked about Lymphoma, need to see Ear,Nose,Throat doc for that. Time marching on, nodes still swollen, feel crumy, went to ENT, Hmmm lets try you on a really strong Antibiotic 2 weeks. No change, Hmmmm maybe we should do a scan, Scan neck, suspicious nodes, 2wks, are you having symptoms? Not loosing weight (I wish) night sweats? (How would I know at mid life?) Maybe we should do a needle Biopsy. Follow up, you have Lg B cell Lymphoma. My response, "that's what I thought" (didn't know there were many different kinds) Sent to TX Onocolgy, Lymphoma type sounds wrong, more tests, put Chemo port in, dr vacations, follow up, doc thinks she wants a node removed to make sure of orginal DX, more time, finally decided to go to MD Anderson in Houston TX for a second. New tests, plus bone bio's, underarm bio, heart check, etc. Final DX is Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia with increased lg. cell, 4th stage. And because not symptomatic, W&W advised. Fine with me, just have to flush the Port out by surgeon every 6 weeks. Enjoying free time, flare ups start, worry, feel good, feel bad, 3 months of up and down.
As I was typing this my PA from MDA called about the flare ups, and I asked about the Chemo pills. He said my type is not a good match for the older pill but there is a new one that is in the final stages of testing. I asked if he thought I could get in on the trial and he thinks I might qualify, lots of checks and balances first. I hope I haven't put everyone to sleep with all the background talk, but its good to talk with people who are also dealing with indolent Lymphoma.
Thanks for listening,
KBeale

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What an ordeal you had getting diagnosed. KBeale. You have my ears anytime. I laugh also when I am asked about night sweats. Sounds like the port was put in a bit early...but at least your blood tests will be easier. It seems I have "great" veins, and told I didn't need a port. But those blood tests WOWOW! It's one awesome moment when ya get someone who does it well. Continue to be strong...and just live your life...we are here for you.
Hugggies :}

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This is my first post on lymphoma. I was diagnosed in January of this year by bone marrow biopsy in my hip. Because it is in my marrow it is a stage 6 but it is indolent. The onc said W&W because my metastic stage IV Breast Cancer will get me first. Comforting, huh? I also have Renal Tubular Acidosis which almost killed me a year ago. Anyway, it is hard to tell when I have symptoms which disease is causing them. Right now I have a bit of swelling behind my ears. Are there Lymph nodes behind the ears? I also have a tiny bit of trouble swallowing. My mouth is the worse part. I have developed a habit of kind of sucking my teeth and pushing on my gums. It is driving me crazy. Dentist cannot see any problem and Onc just rolls his eyes. I am at risk for ONJ because I have been on Zometa for the last 8 years but dentist doesn't think that is the problem. I take 44 pills a day just to maintain. I seem to be tired all the time and just kind of down. Is this the lymphoma? How about the mouth thing? Are there lymph nodes in this area?
Any comments are appreciated.
Thank you.
Mary

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Mary-
" I take 44 pills a day just to maintain. I seem to be tired all the time and just kind of down."

Wow! Unless those pills are the same amped up amphetamine 'black beauties' that Johnny Cash was addicted to, or that the woman who killed the Scarsdale diet doctor was addicted to (I suppose I'm dating myself with these references), I'm guessing 44 pills is at least a partial contributor to you feeling tired all the time.

Let's see stage 6 lymphoma? I've never heard of it. Sounds dreadful, but also somehow inaccurate unless it's part of an older staging system that's been replaced.

I'm not very familiar with breast cancer so I don't know the normal paths it takes when it metastasizes, but is there any concern on your doctors' part that that cancer is metastasizing into the bone, say cervical area, or into the head and neck? Could tumors like that be causing your oral problems?

I only know of Renal Tubular Acidosis because of what it can cause, metabolic acidosis, which is fatal- do you take daily meds for that or something? Is that part of the 44 pack?

As for lymph nodes behind the ear, yes there are. If the human head weren't a walking brain encasement, it might be considered a walking lymph node encasement, as there are hundreds of them in the head. I could only find a reasonable anatomical representation on wikipedia, but this image does a good job of showing you how busy the head is when it comes to nodes.

Ross

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By the way I saw someone mention the hope that if you watch and wait long enough, a magic pill might come along. While the BioVaxID vaccine for follicular lymphoma isn't going to be that magic pill, it or something close to it might be ... well, something close to IT. It's not a vaccine in the traditional sense, but in phase II trials patients with FL were seeing I think about 14 months of extended 'disease-free' time on the vaccine vs the control group. So long as it doesn't make you sick, 14 months is 14 months.

BioVaxID has finished phase III trials and will probably publish their results soon, then chase down FDA approval. could be a couple years. I wrote about their vaccine this morning because I love the field of vaccines and because we have so many FL patients here, and you're such a vocal bunch. One thing I did notice while sifting through the lymphoma vaccine clinical trials is that in the cases of some of them (not specifically BioVest- and i don't recall which ones offhand), inclusion in their study conferred free lifetime access to their vaccine, provided of course it reached the market-- an awesome deal provided the vaccine is proven safe.

Anyway, check out the clinicaltrials page if you have time. I wouldn't generally characterize it as the kind of place where little treasures are awaiting you around this or that corner, if you search enough. but free lifetime vaccination, especially in light of how expensive these will be? not bad.

Ross