I am so blessed

[jamoza]

I'm really proud of my response to a shock medical diagnosis in January 2012 when I was told that I had non-Hodgkins follicular lymphoma . In that time I have totally transformed my life, changing my diet and lifestyle radically and becoming a committed runner and keep-fit fanatic. I have lost around two stones in weight and look years younger than I did when diagnosed. In the summer of 2015 I ran the Lakeland 50 mile challenge and have run several marathons and ultra marathons, raising thousands for Cancer charities and St Benedict's Hospice. I have had so much prayer support from my church family. I am still on "watchful waiting" and am blessed not to have needed any treatment whatsoever. I do get tired very easily, especially if I sit down for any length of time and find it difficult to read without nodding off!! So grateful for audiobooks - I'm a great Inspector Rebus (Ian Rankin) fan.

[jamoza]

Forgot to say, I'm Richard, 63 years old and live in Sunderland, England

[Shar0n Volunteer in reply to jamoza]

Congratulations, Richard on your achievements in changing your life around while helping others. I too am on watch and wait for the same illness. I have also lost two stone and follow a much healthier diet now . I was just about able to swim two years ago and now do 50 lengths of my local pool 3 times a week and walk on the other days. I am 61 and was diagnosed at 59. Continued good health to you and to all of us.

[TezzM in reply to jamoza]

Good on you Richard, that's the way to fight this.

[Hidden]

I love running too, Richard. I do Park Run every 3 weeks during chemo treatment. Just had my 7th cycle. Only one more to go. I'm getting R-CVP. It's good stuff. I will get back to running properly in 2017 as you can beat exercise for combating fatigue.

[Felix_2010 in reply to Hidden]

Hi Maura

I'm on R-CVP for extra nodal Marginal Zone NHL -1 down , 7 to go !

Can I ask you if the side effects get worse after each session ? I coped well with round 1 and was wondering if there's an accumulatiive effect ? I'm feeling really positive about the treatment because I've already seen an improvement in my lymphoma symptoms.

Good luck with your journey !

[Hidden in reply to Felix_2010]

Hi Felix, I am delighted that you are seeing an improvement in your lymphoma symptoms, I've had a similar experience. My tumour reduced dramatically after a couple of cycles. You have every reason to feel positive. This treatment is fantastic and has been very effective for me!

In short, the main cumulative effect of the treatment on me h been increasing tiredness and lack of energy.

I've been told that R-CVP treatment is pretty mild in comparison to other treatments. I was able to continue to run 5km, 2 weeks out of 3, for the first 3 cycles of treatment and continued to work too - but gave up after the 3rd cycle. I walk every day and continue to run 5km once every 3 weeks (i.e. the weekend before the next cycle)

Early in the treatment 2nd/3rd cycle, I found that I needed to rest in the mornings but was OK in the afternoon. I also developed a sore throat which I took antibiotics for but realised after a few cycles that it would go away after a few days.

I've now finished my 7th cycle and for a last 3/4 cycles I've found that I'm OK in the morning but need to rest in the afternoons mainly in the 2nd week.

I also get an ache in my back a couple of days after I come off the steroids which is relieved by a hot bean bag.

My brain is a bit foggy and my concentration levels aren't what they used to be.

I haven't suffered any hair thinning.

I haven't picked up any colds this winter even though my husband and several friends had bad head colds recently.

No sickness.

Good luck with your treatment. You'll be surprised how quickly the time passes.

[Felix_2010 in reply to Hidden]

Thanks for coming back to me. I'm going back for round 2 on 9th December and the past two days I've felt great , able to get out and about and walking etc. I'm feeling the tiredness , and the fuzzy head and sore throat . But it's not as bad as I anticipated and I was so scared ! It sounds like I might feel roughly the same next time , if I'm lucky to have an experienced like yours

Thanks again xxx

[krayburn Partner]

Hi Jamoza, congratulations on all your accomplishments! Glad you can join us on our page

[Joe_gilbert]

Glad you took it so well .. I did as well considering the specialist came in felt my neck and looked at down my throat and said " i had cancer good luck" and walked out the door .. I went there by myself cause i thought i just had a problem with my tonsils or something

[jmcobb50]

I was diagnosed unexpectedly with NH Follicular Lymphoma Stage 3 in Sept 2015. I am a watch & wait. I too have changed my diet, stress and improved sleep. I will have a CT on Dec to be restaged. The nodule under my arm had totally disappeared. Have you been restaged? Is there no evidence of Lymphoma? So glad to hear you are doing well.

[jamoza in reply to jmcobb50]

I did have a new CT scan earlier this year to determine my suitability for a drug trial. The radiographer reported the scan as 'normal' (no visible evidence of tumours). The original tumours have either shrunk or gone altogether (possible or not?). Consultant never mentioned restaging (as far as I know I am 3b as there were tumours in my neck and groin originally). I'm a bit confused (in a happy way) and just live as if there's no cancer. That's why I feel so blessed. I believe the combination of fitness, diet and prayer is healing me.

[jmcobb50 in reply to jamoza]

That's wonderful but I have to ask why would your oncologist want to do a clinical trial? I was not symptomatic this 3a. Did you have B symptoms even thought the tumors were gone?

[jamoza in reply to jmcobb50]

The haematologist thought I might be suitable to take part in a trial of a drug that might extend my remission. But I had to have a CT Scan as my tumours needed to have grown since my original scan, to make me eligible for the trial. When the scan was reported as 'normal' I obviously couldn't take part in the trial and the Consultant just told me to keep doing whatever I was doing!! I don't know anything about B symptoms, unless that means the tiredness that I've always had.

[Sandy_Mouse in reply to jamoza]

I believe it too...everything you are doing to benefit your life...is working

!!!

[jmcobb50]

Forgot to say, this question was for Richard regarding restaging.

[jamoza in reply to jmcobb50]

I have replied, belatedly!!!

[AE-IOU456]

I found your post very encouraging. Was diagnosed with early stage nhl in Dec 2016 six months after mastectomy (my choice) for early stage Breast cancer.I feel absolutely fine but was told by the Consultant yesterday that" lymphoma is like poverty,always with us and can't be erased". I am on the w and w course and found the description depressing so thanks for your account. Does early stage nhl inevitably progress to invasive disease? Rose Marie.

[jamoza in reply to AE-IOU456]

I don't know the answer to your question, Rose Marie, but I choose to believe that it's not going to in my case. I wish some Consultants would learn people skills!!!