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Annabelle
Posts: 9
Joined: Wed Aug 29, 2018 8:56 pm

The fight goes on

Postby Annabelle » Fri Jan 25, 2019 7:33 pm

Our journey with this horrid disease has not been good and as many of you have found out it seems as though we have had to fight to get treatment, and when I feel strong enough I will share our experience, but this is where we are now...........
Today we went to see the Oncologist for the results of my Husband Lez’ midway scan etc., his tumour has shrunk slightly, CA19-9 markers are down significantly, node on the lung no apparent change.....no chance of an operation to remove the tumour...and so we carry on....6 more cycles of folfirinox if Lez can tolerate it, so far his experience of the chemo has been reasonably tolerable and not as bad as feared, fatigue yes but manageable, nausea yes but the medication takes care of it, affected by the cold yes and that has been the worst one, so wrap up, avoid the cold air, cold drinks, and fridge aisles in the supermarket - his exscuse to avoid shopping 😏. He is now beginning to put weight back on (for now the type 2/3c? Is on the back burner) and thankfully through all of this horrid rollercoaster he has never had any pain. We will continue our research for alternative treatment, remain realistic (we know the prognosis isnt good), continue with our plans and as soon as possible when the chemo regime stops get back in the camper and “go”.

Ann W

Charlie81
Posts: 11
Joined: Mon Jan 21, 2019 5:06 pm

Re: The fight goes on

Postby Charlie81 » Sat Jan 26, 2019 11:09 am

just wanted to say hi, my Dad who is 64 has only recently been diagnosed with this. I haven't posted yet but just wanted to reach out to you and say that I am glad you are staying strong and really hope that you get to that camper van for some quality time.

Annabelle
Posts: 9
Joined: Wed Aug 29, 2018 8:56 pm

Re: The fight goes on

Postby Annabelle » Sun Jan 27, 2019 8:23 pm

Hi Charlie81,
Thanks for that. The camper is ready to go A.S.A.P 😎 (even if it is only for a day out, we will take what we can)
I am so sorry to hear about your Dad, it is very difficult to accept isnt it? And although we are going through it ourselves it is hard to know what to say to you, we called one of the lovely nurses on here when we were having a “melt down day” she was very caring and supportive, you will also find lots of support and advice here on the forums too, the specialist nurse we have now has been fantastic and she will take tme to explain the things we dont understand, one piece of advice I would give you is to make sure someone keeps on top of your Dads appointments, if someone says to you that an appointment will be made and sent to you make sure you ask when to expect that appointment to be, and if it doesnt arrive on time chase it up straight away via your specialist nurse, we wish we had instead of waiting for the appointment in the post that didnt come and the promised phone call that didnt happen.....
Sending you love, strength and hugs.
Best Wishes,
Ann W

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: The fight goes on

Postby toodotty » Mon Jan 28, 2019 11:00 am

Wise words Annabelle about chasing appointments. I am glad your husband is tolerating Folfirinox reasonably well as it is the best regime in terms of outcome. I you haven't done already, research Milkthistle, available from any healthshop in tablet format. I used this on my second cycle of chemo (Folfirnox 6-12) and I had less side effects including less problem with the cold fingers and toes, even my hair grew back. It seems to do what it claims and really supports the liver function, believe me I have had more blood tests than I care to count but the medics are always surprised at how good the liver function is.

Keep fighting and get out in that camper!

Erika

Charlie81
Posts: 11
Joined: Mon Jan 21, 2019 5:06 pm

Re: The fight goes on

Postby Charlie81 » Mon Jan 28, 2019 12:53 pm

Hi Annabelle,

Thanks for the advice, and I understand about not knowing what to say to others, although I find it helps just to know that I am not alone and if others are strong and positive despite this very difficult diagnosis then it makes me feel like I can be. AS for chasing appointments my Dad had 4 GP appointments over three months, who all misdiagnosed him and sent him away repeatedly with refulx and he went private in the end to get diagnosed. Since diagnosis he has had his PET scan cancelled!! so more hold ups. I am going to take your advice and I am writing a letter to the people I know have been assigned to him as oncologists to express my concerns about appointments, and delays, and highlight the campaign on here about faster treatment. It may do no good but I know that doing nothing definitely won't and I want as much precious time with my Dad as I can. I am so sorry that this has happened to everyone on this forum but I am so glad for your support.

Keep fighting, keep hopeful, and speak soon,

Charlotte x

Annabelle
Posts: 9
Joined: Wed Aug 29, 2018 8:56 pm

Re: The fight goes on

Postby Annabelle » Mon Jan 28, 2019 5:21 pm

Hi Erika and Charlie81,
Thanks Erika I will check out the milkthistle for Lez, he already has a plant based bananna “ milkshake” most days with a concoction of turmeric, chia seeds, organic wheatgass and hemp - got to get some nutrition into him somehow...he has been off all dairy products for ages now, also the smell of certain foods and perfumes make him feel nauseaus (think he is pregnant really haha), thankfully though most days he is able to eat a normal diet, Roast dinner tonight yum

Charlie 81, keep on fighting and asking questions re scans and all other appointments, we too had PET scan problems, totally unacceptable....Oncology appointment we just thought for a meeting but was for scan result, but he hadnt had the scan that was ordered, it got lost in the system, chemo booked but no PICC line fitted so chemo cancelled, once on the regime most of it has gone to plan. It can be a nightmare and there is no clear plan.