watch and wait

bk1950

does anyone know why we watch and wait before treatment starts?

hodgkoid2003

Watch And Wait
I am much more knowledgable about Hodgkin's more than non-, but I do know many people who have expressed concern over the whole watch and wait thing.

Non-hodgkin's is a slower growing cancer. It only makes sense that you'd want to treat it right away. Aren't we always told, the sooner you catch cancer...

No matter what kind of cancer we endure, the treatments are always are almost never without side effect or consequence. So, the whole idea may be behind, better to treat you when it's needed, rather than treat for a little non-hodgkin's and need more treatment later on. It is less stress for your body to endure.

For instance, I know with Hodgkin's, it can be very fast growing. So treatment is of the essence as far as time.

Paul E. (Hodgkoid2003)

LynnLisiewski

Watch & Wait
I have no idea when I was 1st diagnosed that was the scariest part. It required patience and a belief in God. I believed in God so I prayed for acceptance, someone once told me if you pray for patience God will give you tons of tests for patience. With lymphoma there is not a cure so it depends if it is being active or just sleeping. It is truly a hard concept w&w. I think the Doctor’s w&w to see if you need treatment, how aggressive the treatment shall be. I find that harder than the Cancer itself, with most Caners you can have it cut out or something, but our whole bodies have the lymph nodes and we need them so destroying to many may be harmful. But for me watching & waiting has gotten easier with the help of my walking group and support groups. Please take my words with a grain of salt as it is just my opinion. I have been diagnosed just over a year now went thru 1 cycle of Rituxan and will be going to the Dr.’s tomorrow I am not as afraid as last year. I was diagnosed with stage 4 that scared me at 1st but I found out they stage the blood cancers different than others. Take my words with a grain of salt; everything is different for each person. My point was I hate the term watch & wait, I would rather do.

dixiegirl

Watch & Wait
Watch and wait is something that I see as both a good and bad thing, all at the same time. I have done it, didn't like it but it's ok. My doc has me covered. It was so hard for me to understand the different types of NHL, meaning both indolent (slow growing) and aggressive. You would think aggressive would be a bad thing wouldn't you? Aggressive Lymphomas can be cured! Yes, it's critical to watch everything, every change but dang....chance of cure. With indolent yes, it's not curable...but very liveable.

I have stage 1 very rare form of NHL. I relapsed just a couple months after chemo. We tried to biopsy it and couldn't find it. So, we waited. We scanned again, still there. We watched again for a few months....scanned again....still there BUT NOT growing. So we watched again for a few more months....scanned again and still there BUT again not growing. So after 9 months of Watch and Wait we did radiation. GONE!!! about time. I wasn't in bad health, my weight was stable, no lumps or bumps. And, I made it through the watch and wait torture.

So, now we w&w until it comes back.....could be NEVER. It takes time to be ok with this stuff, well........as well as we can be. This is a good kind of cancer to get. Very treatable. We are survivors. You can do this, we'll be here to help you. Come to the CSN chatroom.

Take Care,
Beth

blueroses

Times change, treatments change, options change
Hey BK, I remember back when I had to make a decision to either watch and wait or same treatment as before (that didn't work as it was back) or transplant and remembered back, at that time, to the first occurance of NHL when they said 'why use a cannon when a gun will do'. Of course that meant why use alot of treatment and damage the body more when only a little treatment might do it. By the time the NHL returned, only a year and a half later, they had totally done a 360 and now were saying 'get the cannons and blow it out of the water first off'.

Like others here have said depends on the person's individual situation and type of cancer and stage as well but times change, they learn more and you just have to go with the flow and trust your gut in the end.

When my oncologist was offering me options, when it came back, he said that the 'waiting and see' approach he knew I wouldn't go for because I was not that type and he was right, but that's just me. I remember another guy who had NHL as well who was treated at the same time as me and he was fine with the wait and see and so were his doctors so that worked for me. Hope you have the kind of oncologist who works WITH YOU and not AT YOU.
Blessings, Blueroses.

bk1950

dixiegirl said:

Watch & Wait
Watch and wait is something that I see as both a good and bad thing, all at the same time. I have done it, didn't like it but it's ok. My doc has me covered. It was so hard for me to understand the different types of NHL, meaning both indolent (slow growing) and aggressive. You would think aggressive would be a bad thing wouldn't you? Aggressive Lymphomas can be cured! Yes, it's critical to watch everything, every change but dang....chance of cure. With indolent yes, it's not curable...but very liveable.

I have stage 1 very rare form of NHL. I relapsed just a couple months after chemo. We tried to biopsy it and couldn't find it. So, we waited. We scanned again, still there. We watched again for a few months....scanned again....still there BUT NOT growing. So we watched again for a few more months....scanned again and still there BUT again not growing. So after 9 months of Watch and Wait we did radiation. GONE!!! about time. I wasn't in bad health, my weight was stable, no lumps or bumps. And, I made it through the watch and wait torture.

So, now we w&w until it comes back.....could be NEVER. It takes time to be ok with this stuff, well........as well as we can be. This is a good kind of cancer to get. Very treatable. We are survivors. You can do this, we'll be here to help you. Come to the CSN chatroom.

Take Care,
Beth

grade 2 follicular lymphoma
i've read and reread your reply to me and i feel better everytime i read it. thank you. i have had alot of ct scans in the last 1 1/2 years, 12 i think. that in itself is scary to me. have you had alot as well? i am hoping to start treatment in july. i don't like the watch and wait thing. i also hope i will get radiation instead of chemo. i have read chemo makes you gain weight and i am already very overweight and that really scares me also. this sure isn't fun is it? ha thanks again.

KarinS

bk1950 said:

grade 2 follicular lymphoma
i've read and reread your reply to me and i feel better everytime i read it. thank you. i have had alot of ct scans in the last 1 1/2 years, 12 i think. that in itself is scary to me. have you had alot as well? i am hoping to start treatment in july. i don't like the watch and wait thing. i also hope i will get radiation instead of chemo. i have read chemo makes you gain weight and i am already very overweight and that really scares me also. this sure isn't fun is it? ha thanks again.

Grade 2 follicular lymphoma
I am new to this group and diagnosed withy follicular lymphoma on June 16th. My story:
I was allowing my newly adopted shelter dog to run in a fenced in park. She ran after another dog and I had no other option than to jump the fence myself to catch up with her.
I am way too old to be jumping over fences. This incident took place just prior to Memorial Day weekend. I spent the entire weekend in bed... with what I thought was sciatica. I work in a hospital and, when I returned to work on the Tuesday following Memorial Day, I mentioned to my primary care doc that I had hurt my back and needed a presciption for the pain. She suggested that I see the orthopedic surgeon, which I did two weeks later. He ordered an MRI to rule out a disk problem. The MRI was on a Tuesday at 9:30 AM. I was back in my office by 10:30AM and my doctor was on the phone by 11:00 telling me I had to see the oncologist immediately. MRI, CT scan, lymph node biopsy, bone marrow biopsy, lots of blood work and a bone biopsy later I have a diagnosis of follicular lymphoma, grade 2. Wow... it all happened so fast. I have no sympoms except for the sciatic pain which came from a fractured L5 vertebra. The CT scan showed lots of lesions throughout my spine and one enlarge lymph node. I am fortunate that I work in a hospital and I work with the doctors, so I am getting special treatment. The "wait and watch" option was mentioned since I am in good health but, until I read some of the comments here, "wait and watch" did not seem like an option to me. My thoughts were: you found it now get rid of it. I have been told that the treatment is worse than the disease so putting it off for awhile might be good idea. I am hoping that I can learn enough from people like you which will allow me to made good decisions.

KarinS

Hestia

KarinS said:

Grade 2 follicular lymphoma
I am new to this group and diagnosed withy follicular lymphoma on June 16th. My story:
I was allowing my newly adopted shelter dog to run in a fenced in park. She ran after another dog and I had no other option than to jump the fence myself to catch up with her.
I am way too old to be jumping over fences. This incident took place just prior to Memorial Day weekend. I spent the entire weekend in bed... with what I thought was sciatica. I work in a hospital and, when I returned to work on the Tuesday following Memorial Day, I mentioned to my primary care doc that I had hurt my back and needed a presciption for the pain. She suggested that I see the orthopedic surgeon, which I did two weeks later. He ordered an MRI to rule out a disk problem. The MRI was on a Tuesday at 9:30 AM. I was back in my office by 10:30AM and my doctor was on the phone by 11:00 telling me I had to see the oncologist immediately. MRI, CT scan, lymph node biopsy, bone marrow biopsy, lots of blood work and a bone biopsy later I have a diagnosis of follicular lymphoma, grade 2. Wow... it all happened so fast. I have no sympoms except for the sciatic pain which came from a fractured L5 vertebra. The CT scan showed lots of lesions throughout my spine and one enlarge lymph node. I am fortunate that I work in a hospital and I work with the doctors, so I am getting special treatment. The "wait and watch" option was mentioned since I am in good health but, until I read some of the comments here, "wait and watch" did not seem like an option to me. My thoughts were: you found it now get rid of it. I have been told that the treatment is worse than the disease so putting it off for awhile might be good idea. I am hoping that I can learn enough from people like you which will allow me to made good decisions.

KarinS

just wrote a brillant reply and lost it
oh well, maybe it wasn't so brillant. Was mostly saying that any decision you make in tandem with your onc will be the one that you need. I think, when all is said and done, if you've listened to your medical advisors and yourself, you will come up with right answer. Much info on American Cancer Society website and also on Leukemia and Lymphoma Society website. If you are a person who needs to know what, where, if, when, etc., then googling these sites would get you started. I need to know at least enough to ask questions of onc. Wait and watch would be very difficult for me, it's like you wrote, "you found it now get rid of it."
Yet several of the reples to wait and watch are from people able to do this.

I have NHL, am in remission since 4/09, and have next PET scan early Aug. I have a port in that gets flushed once a month and will have it for at least a year, if not longer. So to some extent, it is all about waiting and watching. It's that you have a choice about waiting and watching right now. Hard decision!!

I do envy you your hospital connections, what better connection to have when dealing with cancer of any type.
take care, let us know what you decided,
Hestia

gotto

KarinS said:

Grade 2 follicular lymphoma
I am new to this group and diagnosed withy follicular lymphoma on June 16th. My story:
I was allowing my newly adopted shelter dog to run in a fenced in park. She ran after another dog and I had no other option than to jump the fence myself to catch up with her.
I am way too old to be jumping over fences. This incident took place just prior to Memorial Day weekend. I spent the entire weekend in bed... with what I thought was sciatica. I work in a hospital and, when I returned to work on the Tuesday following Memorial Day, I mentioned to my primary care doc that I had hurt my back and needed a presciption for the pain. She suggested that I see the orthopedic surgeon, which I did two weeks later. He ordered an MRI to rule out a disk problem. The MRI was on a Tuesday at 9:30 AM. I was back in my office by 10:30AM and my doctor was on the phone by 11:00 telling me I had to see the oncologist immediately. MRI, CT scan, lymph node biopsy, bone marrow biopsy, lots of blood work and a bone biopsy later I have a diagnosis of follicular lymphoma, grade 2. Wow... it all happened so fast. I have no sympoms except for the sciatic pain which came from a fractured L5 vertebra. The CT scan showed lots of lesions throughout my spine and one enlarge lymph node. I am fortunate that I work in a hospital and I work with the doctors, so I am getting special treatment. The "wait and watch" option was mentioned since I am in good health but, until I read some of the comments here, "wait and watch" did not seem like an option to me. My thoughts were: you found it now get rid of it. I have been told that the treatment is worse than the disease so putting it off for awhile might be good idea. I am hoping that I can learn enough from people like you which will allow me to made good decisions.

KarinS

Hi KainS
Hi ,
I was diagnosed with mantle cell lymphoma on July 3. Wait, on JUne 11 I got a report from the biopsy of the tissue removed from my nose - small b cell lymphoma. I saw an oncologist and did a lot of tests:blood clear,CT clear,MRI clear, bone marrow biopsy clear, I went to see my onco and he admitted he was baffled with lack of other symptoms or evidence of any lesions. He said that he sent the tissue to be further diagnosed and it came positive on cyclin-D1 and confirmed for MCL by 11, 144 mutation. So I did aPET scan and again nothig except for confirmation of increased metabollic activity on the nose tissue site. He suggested chemo RCHOP 1 every 3 weeks, spinal tap with metathraxate injection and followed with radiation for three to 4 weeks. I am not sure I want to do it, especially that I feel like I am being rushed to start NOW. I read dr. Leonard's report from Cornell university that it looks like it is reasonable to defer the treatent for 3 or more months and just watch the progress. Suprisingly, no harm done to those patients who did that. I am in the process of arranging for a second and third opinion before I subject myself to chemo assault. I am an RN by my dr is in a private practice and I am kinda lost now. I talked to a gal from one of these cancer site people and she also advocated to get second and third opinion. I do not have symptoms. I am like you gathering info to make the decision. I do not like that my MCL is within my head.

Louise53

LynnLisiewski said:

Watch & Wait
I have no idea when I was 1st diagnosed that was the scariest part. It required patience and a belief in God. I believed in God so I prayed for acceptance, someone once told me if you pray for patience God will give you tons of tests for patience. With lymphoma there is not a cure so it depends if it is being active or just sleeping. It is truly a hard concept w&w. I think the Doctor’s w&w to see if you need treatment, how aggressive the treatment shall be. I find that harder than the Cancer itself, with most Caners you can have it cut out or something, but our whole bodies have the lymph nodes and we need them so destroying to many may be harmful. But for me watching & waiting has gotten easier with the help of my walking group and support groups. Please take my words with a grain of salt as it is just my opinion. I have been diagnosed just over a year now went thru 1 cycle of Rituxan and will be going to the Dr.’s tomorrow I am not as afraid as last year. I was diagnosed with stage 4 that scared me at 1st but I found out they stage the blood cancers different than others. Take my words with a grain of salt; everything is different for each person. My point was I hate the term watch & wait, I would rather do.

Do you have follicular NHL?
Do you have follicular NHL? What grade? I have grade I, Stage IV and am just starting the Rituxan treatment. How many Rituxan treatments did you have and did it put you in remission?
Louise53

bu4u2b

KarinS said:

Grade 2 follicular lymphoma
I am new to this group and diagnosed withy follicular lymphoma on June 16th. My story:
I was allowing my newly adopted shelter dog to run in a fenced in park. She ran after another dog and I had no other option than to jump the fence myself to catch up with her.
I am way too old to be jumping over fences. This incident took place just prior to Memorial Day weekend. I spent the entire weekend in bed... with what I thought was sciatica. I work in a hospital and, when I returned to work on the Tuesday following Memorial Day, I mentioned to my primary care doc that I had hurt my back and needed a presciption for the pain. She suggested that I see the orthopedic surgeon, which I did two weeks later. He ordered an MRI to rule out a disk problem. The MRI was on a Tuesday at 9:30 AM. I was back in my office by 10:30AM and my doctor was on the phone by 11:00 telling me I had to see the oncologist immediately. MRI, CT scan, lymph node biopsy, bone marrow biopsy, lots of blood work and a bone biopsy later I have a diagnosis of follicular lymphoma, grade 2. Wow... it all happened so fast. I have no sympoms except for the sciatic pain which came from a fractured L5 vertebra. The CT scan showed lots of lesions throughout my spine and one enlarge lymph node. I am fortunate that I work in a hospital and I work with the doctors, so I am getting special treatment. The "wait and watch" option was mentioned since I am in good health but, until I read some of the comments here, "wait and watch" did not seem like an option to me. My thoughts were: you found it now get rid of it. I have been told that the treatment is worse than the disease so putting it off for awhile might be good idea. I am hoping that I can learn enough from people like you which will allow me to made good decisions.

KarinS

watch and wait...
I will be interested to see how things go for you... My husband has similar cancer with L5 fracture and tried Rituximab... No Go... didn't help and gave him angina and bp's running about 159/102... Three years later we are looking at other options such as bexxar... He seems to have a five year downside as the cancer peaks every 5 years... Cat/pet/mri do not show his tumors...execpt for a 4cm nodule in the left posterior lung... They can see them and biopsies show 7 cancer markers and bone marrow shows 22 markers... His mom had luekimia and survived 23 years after diagnosis until she used Rituximab...Sped her heart up on the second treatment forcing life support and alot of chasing rabbits until her death four weeks later...My husband won't do chemo... Please let me know what you decide!

DJ

ctcreed

watch and wait
I was one of Sharon Murphy's patients at Children's Hospital in Chicago before she moved to Texas. She asked my parents to watch and wait with my treatment after excising my right occipital lymph node. We watched, and waited, and that was 1989... I've never had any other signs of the disease. I think this is why we watch and wait. Hodgkin's is slow.. and there is always the possibility of luck, that you really don't need more treatment.

lees1953

watch and wait
I was diagnosed in April 09; quite by accident as most are. had no real symptoms but further testing put me at Stage IV due to bone marrow involvement and extra-nodal, I have a malignant tumor on the aorta at bifurcation. Over the summer the fatigue grew worse and worse so last Thursday I had my 1st round of Rituxan, have 3 more to go, then more testing and we see where we go from there.

I did a w&w from April until now and it did make me nervous, but after much reading understood that sometimes; unless you have symptoms, there really isn't a hurry.
But the fatigue was wearing me out and the nodes were still growing though minimally, so I thought best to start treatments before i became too weak.

good luck, sheila

mvielweber

Wait and Watch

I am a breast (2013) and lung (2016) cancer survivor.  I was also diagnosed (2016) with Hairy Cell Leukemia Variant -  which I explain to others as a rare cancer of a rare cancer.  The variant type of Hairy Cell Leukemia is more agressive; and I am only told that there is no real treatment for it; however, the silver lining in my case is at this time I am in the watch and wait mode which is a torture in itself and yet blessed because life can be pretty normal, if I don't think about the cancer.  I am hoping for a "very long" relationship with Wait and Watch -  Everyone have a great day!

68Pontiac

Louise53 said:

Do you have follicular NHL?
Do you have follicular NHL? What grade? I have grade I, Stage IV and am just starting the Rituxan treatment. How many Rituxan treatments did you have and did it put you in remission?
Louise53

NHL In the knee

I found out that I have the same thing follicualar NHL stage 3 as of right now but have to get radation this week they found a mass in my knee of all places 

found out that only like 7% of people have this problem lucky me  after a biopsy no other treatment the wait and see is a so hard to understand about this cancer I guess Good luck too you 

68Pontiac

KarinS said:

Grade 2 follicular lymphoma
I am new to this group and diagnosed withy follicular lymphoma on June 16th. My story:
I was allowing my newly adopted shelter dog to run in a fenced in park. She ran after another dog and I had no other option than to jump the fence myself to catch up with her.
I am way too old to be jumping over fences. This incident took place just prior to Memorial Day weekend. I spent the entire weekend in bed... with what I thought was sciatica. I work in a hospital and, when I returned to work on the Tuesday following Memorial Day, I mentioned to my primary care doc that I had hurt my back and needed a presciption for the pain. She suggested that I see the orthopedic surgeon, which I did two weeks later. He ordered an MRI to rule out a disk problem. The MRI was on a Tuesday at 9:30 AM. I was back in my office by 10:30AM and my doctor was on the phone by 11:00 telling me I had to see the oncologist immediately. MRI, CT scan, lymph node biopsy, bone marrow biopsy, lots of blood work and a bone biopsy later I have a diagnosis of follicular lymphoma, grade 2. Wow... it all happened so fast. I have no sympoms except for the sciatic pain which came from a fractured L5 vertebra. The CT scan showed lots of lesions throughout my spine and one enlarge lymph node. I am fortunate that I work in a hospital and I work with the doctors, so I am getting special treatment. The "wait and watch" option was mentioned since I am in good health but, until I read some of the comments here, "wait and watch" did not seem like an option to me. My thoughts were: you found it now get rid of it. I have been told that the treatment is worse than the disease so putting it off for awhile might be good idea. I am hoping that I can learn enough from people like you which will allow me to made good decisions.

KarinS

I have the Non-Hodgkin's lymphoma

I have the lesions in my leg they are tender and painful at times  they found a 3cm tumor in my knee NHL only 7 % of people get this just my luck 

I am doing radation this week hope you feel better good luck 

ShadyGuy

68Pontiac said:

I have the Non-Hodgkin's lymphoma

I have the lesions in my leg they are tender and painful at times  they found a 3cm tumor in my knee NHL only 7 % of people get this just my luck 

I am doing radation this week hope you feel better good luck 

Could you share ...

how the lesions in your legs manifested?  Bumps, lumps, depressions etc. You said they hurt. How did they hurt? - sharp pain, dull pain, painful to touch etc. Thanks