Follicular lymphoma

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Starting Treatment 27th December

BedrockFred
Posted by

Hi Mike

Thanks for the reply really is good having you around, keeps me going reading your posts and your advice

Think I maybe over did it with the 3 plus mile walk, just back from taking the dogs for a walk now time to relax 

Together we are stronger

Together we are stronger
Nix67
Posted by

Hi Fred,

Sorry to hear about the fatigue - I think it goes with the territory. I guess we begin to forget what ‘normal’ is. When people ask me how I feel I can now reel of a multitude of ailments that are ‘normal’ to me these days but fill them with horror

Although I had a rough few days during cycle 3 itself I have to say that this week has been no different for me than cycle 2 was. I have been at work full time but asleep on the sofa in the evenings and bedtime is now 9pm - lol. 

However my blood results were good last Thursday so I have been given the all clear to fly to the UK next Saturday - provided I don’t catch anything nasty from the little 5 year olds I hang around with on a daily basis ........

I have an ultra sound booked for next Tuesday so I am keeping my fingers crossed that the results from that are good. 

Hope that you are having a restful weekend - and maybe taking a break from the 3 milers ..........

Nicky 

Hi Paul,

How are you doing? 

Has cycle 6 thrown up any nasty surprises that we need to look forward to ........ When do you start your maintenance treatment? I am guessing that it is after the results of the scan that you are booked in for in March. 

Hopefully the maintenance treatment is much easier - at least it is only every other month !! 

Hope that your weekend is going well too.

Nicky 

Jenko1979
Posted by

Hi Nicky,

cycle 6 is so far very comparable to cycle 5. In almost over day 12 now and hopefully over the worst. Back to full time work tomorrow which will be nice in some respects to get back to normality.

maintence treatment starts in April hopefully after a PET negative scan result at the end of March 

regards

Paul 

BedrockFred
Posted by

Big week for me coming up scan on Monday results on Wednesday, chemo cycle 4 on Friday 

Wishing hoping and praying for good scan results to give me a boost, still having the fatiuge problems but not as bad as I was

Together we are stronger
Peter1954
Posted by

Hello Fred,

Good luck this week, however the fatigue will carry on, I'm now 3 weeks since my last chemo and only just feeling a little bit more energetic, but I feel it'll be summer before its passing to some form of normality, whatever that means. I was told before I started it would take a year before I could do the things that I used to take for granted.

Would I go through it again, indeed I would, I don't feel as if life is on hold at all just need to take every day as it comes. I've even been down to the driving range this week, but it'll be next year before I attempt a round of golf as I like to carry my clubs, keeps me fitter that way. I also have an invite to go rowing with a friend next week, lazy scull down the Thames at Lower Sunbury, which I am looking forward to. I have my final PET/CT scan a week tomorrow (4th March) then see the doctors on the 8th.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Jenko1979
Posted by

Hi Fred,

good luck this week, I really hope it all goes well for you.

im nearly 3 weeks post cycle 6 and I was back out on a pretty pacey 25 mile bike ride yesterday with no real issues.

so there is light at the end of the tunnel.

regards

Paul 

Nix67
Posted by

Hi Fred,

Good luck this week - I will be keeping my fingers crossed for you.

I had an ultra sound last  week - after session 3 - and my lymph nodes are still enlarged but have shrunk since the first ultra sound so I am hoping my heamotolgist will be pleased with the results. She doesn’t want me to have a PET/ CT scan until the end of session 6. She reckons she can tell enough from an ultra sound without pumping more crap into my body so I am hoping she is right .........

She has however allowed me to fly ( again ) so I am currently enjoying some very spring like weather in the U.K. Was -2 when I left Vienna yesterday ........

I head back for cycle 4 as soon as I get back.

Paul,

So Pleased there is light at the end of your tunnel. Not sure I could cycle 25 miles even when I was fit let alone now - lol.

Nicky 

BedrockFred
Posted by

Thanks for all the messages, I think from today until Wednesday afternoon will seem quite a while for me

Nicky I'm sure your team know what they are doing and it's good to hear your lymph nodes have shrunk, this weather really helps to keep focused and positive  

I am a little behind you with treatment so follow your progress with interest good luck with with cycle 4 

Seems every team do things a little different I was going to have a scan after cycle 2 but they were unable to get an appointment in time, personally I think a scan after cycle 3 will be better gives the treatment a little more time to get working 

Still manage to get out with the dogs after getting over the worst of the fatigue, managed to get walks up to two and a half miles, I do enjoy getting out into the fresh air and walking along the river all alone with the dogs, like you not sure I could do a 25 mile cycle ride but am missing going up north to watch my grand daughter doing her triathlon's she's doing really well and has been selected for the county team which is quite an achivement considering she had a couple of months off training etc with an injury before and over Christmas

Fred (Paul)

Good luck everybody will be thinking of you all as we progress along with the treatment 

Together we are stronger
Nix67
Posted by

Hi Fred,

Keeping my fingers crossed for good news for you today.

Nicky 

BedrockFred
Posted by

Just back from my appointment, and it's good news for me there is a significant improvement tumours have reduced especially in the chest

On same treatment plan ie 3 more cycles of chemo and then 2 years maitinance 

So good to see the scans and the improvement from scan 1 to scan 3

 Good luck everybody my thoughts are with you

Together we are stronger
Thehighlander
Posted by

Great news

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Nix67
Posted by

Fab news

Nicky 

johnr
Posted by

I always think its so motivational when you see the differences in the scans and how the disease has been hit hard, it makes the next 3 rounds easier as you know its working well.

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
BedrockFred
Posted by

Well back from chemo cycle 4 feeling really tired but otherwise OK, seemed a long haul today leaving home at 7am and back home 5pm 

Good luck everybody and please keep me updated on your journeys 

Together we are stronger
Peter1954
Posted by

Hello Fred,

Glad you are okay but tired, its a slog and no mistake, but I think we can all draw positives from it. I've had a horrible week of very little sleep and getting dreams that I've never had before, I'm fine during the day, just don't look forward to bedtime even when I'm tired. . Think its the fact Monday I have my scans and am feeling anxious.

But thats life I guess, onwards and upwards I hope

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln