Watch and Wait -

[Josie2rulrs]

I would like to know how many out there have been diagnosed and never treated, just watch and wait...and for how many years.....

[Shar0n Volunteer]

Three years for me- so far so good; next checkup in November. I try not to think further ahead than that.

[Super60 in reply to Shar0n]

It's been eight years for me.

[Josie2rulrs in reply to Super60]

thank you....this blood disease (don't want to say the C word)

is a mysterious one

[Josie2rulrs in reply to Super60]

what was your initial diagnosis...

[Super60 in reply to Josie2rulrs]

Mine is very rare.I had lymphoplasmacytic lymphoma 1VA.Transformed lymphoma into another cancer stage 1A.

[Josie2rulrs in reply to Super60]

I wish you the best.

[AE-IOU456]

Me too Josie! Have just had first follow up appointment. Was told that when diagnosed last November I was anaemic and had a high white cell count but heamoglobin and white cells now within normal levels. Am delighted but find the uncertain future hard to handle. Will now have a telephone consultation (blood test first) in six months and hospital appointment in May 2018. Somewhere between the two will also have the first annual follow up after breast cancer surgery last June. Thank God for the NHS we owe it so much. Longest that I have heard of someone on watch and wait is 22 years. That would make me 96 so here's hoping.... Good luck. Rose

[Smileyman in reply to AE-IOU456]

I was diagnosed in December after a biopsy on a chin lump that had been slowly growing for well over 2 years, what worries me (the thought fills me with dread!) is the comment made by the haematologist at my April check-up that if I remain not needing treatment for a further 2 years I will be discharged by the hospital back to the care of my GP. Why - well the battle to get an appointment at a sensible time of day with the GP, the wait for the appointment to happen followed by the wait for a referral to reach the hospital and the hospital to schedule an appointment, I can see the whole process to be not less than a 3 week struggle!

[Josie2rulrs in reply to Smileyman]

very confusing isn't it...

but the best to you....

[AE-IOU456 in reply to Smileyman]

Hi there, was told by my Consultant Heamatologist at my first post diagnosis appointment that GPS do not want to pay for hospital follow ups on the watch and wait programme. Apparently they feel they can manage regular blood tests and seek help if any changes are seen. In an ideal world perhaps so but in the real world that you describe plus the endless series of locums that turn up I do not have confidence in that as effective monitoring. As an ex nurse, I know that endless changes in medical staff can mean that lab results can go unread. Have opted to stay with the hospital. Presumably will have the same problem at each appointment.

[Smileyman in reply to AE-IOU456]

Thanks for the comment, my 2 year point will be in 2019 so I have time to consider whats next .... and ask the all important questions of both consultant and GP to make sure I get the care I need, not what a pen pusher wants me to be given!

[Josie2rulrs in reply to AE-IOU456]

wow 22 years ill go for that too

I would be 83

[Josie2rulrs in reply to AE-IOU456]

best to you

[jmcobb50]

I was diagnosed August 2015 NHFollicular Lymphoma stage 3 A still in W& W. Feel fortunate but still get nervous

[Josie2rulrs in reply to jmcobb50]

me too...

its so strange like you have this but you don't......

[jmcobb50 in reply to jmcobb50]

Just got back from my oncologist and had labs and 6 month CT. No changes so we will continue with W&W. Go for labs in 3 months from nowbwith exam by oncologist and CT in 6 months if no symptoms and labs are good! It will be 2 years in August with W&W!

[TezzM]

Diagnosed last November coming up to my second review this month. Fingers crossed

[Josie2rulrs in reply to TezzM]

Best to you

[deestb]

Was diagnosed with NHL Waldenstroms in 2014 it's been an anxious time but am doing fine...The onco has reassured me I will be here for quite some time!!! ..I am fortunate to have been having counsellings sessions....it has really helped.. I have a new onco and feel that I am in very good hands as he is a specialist in NHL and is on a team inf one of the best centers in the world (Vancouver BC) I am more relaaxed...very lucky so far....he understands the uncertainty we feel when on watch and wait...so we need to make the most of each day and have things to look forward to. and keep active as much as possible .am so thankful for this site as I am feeling isolated most of the time ...

[Josie2rulrs]

Thank you for your reply. Keep Positive!!

[laylalulu]

I was diagnosed in 2014. With marginal zone lymphoma. I had my spleen removed and everything is looking great . I have bloodwork every 3 months and am now seeing my doc every two years versus yearly. Feeling blessed

[Josie2rulrs in reply to laylalulu]

wonderful

[jamoza]

It's nearly five and a half years for me. After initial shock of diagnosis of fNHL stage 3b, i took up running, changed to a healthy fat, high protein, low carb diet and got lots of prayer from my Christian friends. Just celebrated 5 years treatment-free by running 5 marathons on successive days and raising (so far) nearly £7000 for my local hospice.

[Josie2rulrs]

God bless!

[Dboggs]

I was on a watch and wait for a year or more. But my quality of life was not good. I was weak, sick and lost my full time job. So at one point I just told the oncologist I wanted to be treated. He put me on a two year protocol of Rituxin every 8 weeks for two years. I have been stable since then and am almost 7 years out. I was able to return to full time work. With Follicular Lymphoma you never know when it come back and I have had some scares, but no more treatment yet.

[Josie2rulrs in reply to Dboggs]

thank you for that info....

[DCMT]

1.5 years for my hubby with Waldenstrom's Macroglobulinemia. Onco/Hemo is ordering another Viscosity Plasma test BTW. He says that all other indicators do no suggest a problem. Hubby remains symptom free.

[Josie2rulrs]

wonderful...here's to the best health.

[Hidden]

I've been on watch and wait for 4 years now and feel fine but do get fatigued. No treatment to date. I try not to think about it too often, but I do worry at times about what the future holds. I also find it difficult hearing some friends and family members say, why are you always tired. I'm a bit overweight so I believe they think that is the reason for my fatigue. Any suggestions on how to respond without hurting anyones feelings? Thanks in advance !

[Pollynic in reply to Hidden]

I get the same question only my family say it's because I'm not exercising!

Just try to ignore it

Nobody can understand how it feels to be told you have cancer its draining !

Good luck

[jetrueba2004]

I was just dianosed with Marginal Zone lymphoma of the spleen I am 32 years old. Hematologist/ Onc specializes on Lymphomas and has assure me this is very treatable and look at it like a chronic disease and that i can have a long life I have read online a lot and it doesn't say that so I don't know what to think however I do feel great and it was found by accident. I have completely change my diet eating lots of fruits and veggies and drinking lots of green tea and I hope i can go many years without treatment like some of you guys here. 🙏🏻😍

[Josie2rulrs in reply to jetrueba2004]

Yes it seems like that you have a very good doctor

[jetrueba2004 in reply to Josie2rulrs]

Thank you Josie and I hope so even better if he is right hehe

[camryn4]

I was diagnosed 14 years ago and have been on w/w. Recently discovered a swollen node in the groin. Had ultrasound and cat scan and the usual blood tests. I am going to an oncologist next week for more blood tests based on my last test and find out what is going on. Up to this point I have never been treated but that might change now. I feel positive about the whole thing.

[Josie2rulrs]

Wow that is a long time....I wonder if the longer you go the safer you are?

even if it has reared its ugly head, there seems to be a lot out there for treatment, wishing you the best.

[camryn4]

I was diagnosed with nhl 14 years ago and have been on wait and watch. Recently found another swollen lymph node and my oncologist isn’t concerned at this point. Still on w/w. Good news. Ps. I have never had any kind of treatment.

[Josie2rulrs]

this is wonderful news and very hopeful for all of us.

How many nodes did you have swollen when you were first diagnosed...

I am on w/w no treatment since July of 2015

[BellaG333]

Hi there,

I have been on watch and wait 13 years for follicular NHL, stage 4, grade 1. I had three enlarged lymph nodes when I was first diagnosed they found by accident. Six months later, one disappeared completely and the other two had shrunk. I followed everything that Robert Miller at lymphomasurvival.com says to do. He’s a retired dean who’s had fNHL for 33 years. He stays up to date on all the latest and is seriously such a gift in my life. Even though I’ve never met him! Wishing you the best Josie!

[Josie2rulrs]

This is great news.. I will have to check him out....

so far its been 4 years for me with no treatment...have you had treatment?