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toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Thu Aug 02, 2018 3:44 pm

Hi Keith,
Indeed great news. The reduction in tumour should also mean that your daughter's digestion may recover a bit so hopefully less diarrhoa. My scan is on Monday, so totally understand the trepidation.
toodotty

KeithKerry
Posts: 36
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Fri Aug 31, 2018 9:34 pm

Here we are again a month later. I hope those of you that were awaiting news of scans had positive news and that those of you with loved ones fighting this awful disease are staying strong as individuals and as family units.

So, fast forward one month and we're still a family of four, plus our four beautiful and precious grandchildren. Four and four makes eight. In the eighth month of the year we have news that our amazing daughter is still battling on and defying the odds. Her liver is now completely free of the disease and there is only scar tissue where metastatic tumours and nodules were just a few weeks ago. The primary tumour in her pancreas has shrunk even further. Lymph nodes around her pancreas appear normal. Tumour markers are now just low double digits above the accepted normal range.

No further weight loss, and a healthy appetite complete an absolutely astounding turnaround from March of this year. This is the best we could possibly have hoped for or even dreamed of from first line treatment in the circumstances. Obviously there is no cure for stage IV pancreatic cancer, but in the end you learn to accept and grasp the best that can possibly be had with both hands. Her quality of life is far better than any of us could have imagined it would be in the early days.

We have learned a lot as a family from this experience. It has made us stronger and brought us even closer together than before this happened. I have learned a lot about myself in the process as well. Our daughter has been a huge source of strength and inspiration to me and I continue to be humbled by her strength of will and determination to carry on with her life. It has caused me to change my outlook on life in an extremely profound way, both at work and at home.

We are a well grounded family and we understand fully about this disease. We have researched tirelessly and have learned much about what could have happened in the six months since we received the dreadful news. We understand that things could have been so different so very easily.

We can only hope that the positive news continues for as long as possible, but in the meantime we celebrate what we can when we can. Onward and upward.

kate2101
Posts: 65
Joined: Fri Jun 15, 2018 4:20 pm

Re: This cruel disease

Postby kate2101 » Sat Sep 01, 2018 8:58 am

I was so happy to read your post and delighted your daughter is doing so well. It’s so good to hear some good news, it lifts the spirits and gives us fellow sufferers hope, the best medicine there is.

Love to your daughter, you and your family, I don’t need to say stay positive because you are! A positive mental attitude is a valuable tool and can keep you sane in this mad world.

Again, wonderful news, enjoy your weekend :D

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: This cruel disease

Postby Veema » Sat Sep 01, 2018 11:08 am

Amazing...soooo pleased for you all.

Vx

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: This cruel disease

Postby sandraW » Sat Sep 01, 2018 1:28 pm

Great great news long may it continue. love sandrax

Kerry
Posts: 20
Joined: Wed Jun 20, 2018 7:22 pm

Re: This cruel disease

Postby Kerry » Sat Sep 01, 2018 6:38 pm

That’s such fantastic news!

So happy for you all. It’s great to hear something positive and made me so happy to read.

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Tue Sep 04, 2018 11:23 am

KeithKerry,
Absolutely delighted that your daughter is responding so well. Why wouldn't she? She is young, has a very supportive family and even reason to keep fighting to live. Keep writing your own story!
Toodotty

KeithKerry
Posts: 36
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Tue Oct 02, 2018 6:02 pm

An update for anyone following this thread.

In late August we had the really good news of further shrinkage of the primary tumour on my Daughter's pancreas as well as the virtual disappearance of the disease from her liver. Today we had even better news!

There has been further 'significant reduction' in the primary tumour and her liver is clear, apart from scar tissue and one tiny 'area of interest' that is also probably scar tissue. So, although we haven't been given the magical 'NED', the scan has not been fully reported on yet and the initial clinical opinion is that there is little disease left to treat now and what may remain is currently dormant. Their belief is supported by the initial views of the scan and the now normal tumour markers.

Now we have a complete break from chemotherapy for 3 months and then another scan to see if anything has changed, with the caveat that if tumour markers go up significantly again or my Daughter experiences any return of symptoms or other possibly connected illness she is to contact the Oncology department immediately and they will review that straight away.

For those of you that are going through this or have experienced this in the past, I'm sure that you will understand the mix of tremendous relief but some trepidation as well. The chemotherapy is your battering ram. It is your weapon for fighting back. It is your beacon of hope. Not having that is going to be an unnerving experience.

But, it does mean a number of very positive things. It means that my Daughter does not have to give up 3 Fridays out of every four of her life to spend what usually amounts to a whole day at the hospital. She can have her PICC line removed for now if she wishes. She can go away on holiday with us without either feeling drained by the effects of the chemotherapy for the first few days, or having to come home a day early because it is treatment day. It means that her hair, eyebrows, and eyelashes will have a chance to grow back. It means that she can have a return of some semblance of normality to her life for a few weeks.

As a family we have learned that the few days leading up to a staging scan and then the week or so waiting for the results is a profoundly harrowing time when quality sleep is more or less impossible to come by and we can think of little else other than what we might or might not hear from the results. But, we have also learned that for a few blessed weeks after the results have been communicated and discussed with us that we can have something of a break from the bulk of the fear and worry. Even though it doesn't stop the horror of it all bludgeoning its way into our uppermost thoughts at times, we can have some semblance of respite from the gnawing fear and dread of the future.

When I first got the news that my Daughter had inoperable incurable life limiting cancer (I still cannot bring myself to type or say the 'T' word) my mind completely rejected anything other than a complete cure and normal life expectancy for her. She is so young at 35 and has 3 even younger people that need her and depend on her for absolutely everything.

But I had to get my head around what had happened, and if you had offered me this news 6 months ago once I had finally done that, I would have pulled your arms (and legs) off to have it.

Onward and upward we go!

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Tue Oct 02, 2018 6:58 pm

Hi Keithkerry,
That is indeed wonderful news, it is good to have something positive on the site for a change. Even better to get some normality back to your daughter's life.

Sending you all a big happy hug,
toodotty

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: This cruel disease

Postby Veema » Wed Oct 03, 2018 11:22 am

That really is truly wonderful news.

I hope she can now enjoy the next few chemo free months and fingers and toes crossed, even longer.

Vx

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: This cruel disease

Postby Dandygal76 » Thu Oct 04, 2018 12:09 am

Excellent news. We all got the scanxiety (as we called it) before results. Enjoy this moment, enjoy your holidays, enjoy your family. I know you will be concerned her not having chemo but it is only now (that I am not a rabbit in the headlights) that I really understand the science of it. If it is not active, it is not taking in the chemo and people can have a relatively long time in this stage. There has though been some chat regarding some intermittent/monthly chemo to help keep it at bay (I don't think it is fully proven) but if you want to look into it the I would call PCUK nurses who I am sure will message me if they do not want me to give rubbish advice!

Have the most wonderful holiday,

DG

KeithKerry
Posts: 36
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sat Oct 06, 2018 12:32 am

Dandygal76 wrote:
> Excellent news. We all got the scanxiety (as we called it) before results.
> Enjoy this moment, enjoy your holidays, enjoy your family. I know you
> will be concerned her not having chemo but it is only now (that I am not a
> rabbit in the headlights) that I really understand the science of it. If
> it is not active, it is not taking in the chemo and people can have a
> relatively long time in this stage. There has though been some chat
> regarding some intermittent/monthly chemo to help keep it at bay (I don't
> think it is fully proven) but if you want to look into it the I would call
> PCUK nurses who I am sure will message me if they do not want me to give
> rubbish advice!
>
> Have the most wonderful holiday,
>
> DG

Thank you Dandygal76 and Veema for the words of encouragement.

The PICC line was taken out, a move greatly encouraged by the Oncology team. They're a wonderful bunch and have helped to keep my Daughter and the rest of the family positive and focused on getting well and looking after each other. They have celebrated each small milestone with us and you can see that their joy is genuine. The nurses in particular seem willing to take every step with you.

This is a milestone that I was never certain that we would reach, far from it. Six months since diagnosis and here we are with the visible cancer all but gone and whatever traces are left being dormant. A 3 month break from chemotherapy now. No PICC line to worry about and every Friday back as just a regular day in the week.

This has provided an incredible lift for the whole family. We can even dare to try to forget about cancer for now and have 3 months of some kind of normality in our lives. We have a family holiday planned for the middle of October which I think we are all going to enjoy just that little bit more now.

My Daughter is absolutely delighted and seeing her come out of the clinic with a genuinely full and entirely carefree and relaxed smile on her face again filled me with tremendous joy and affection. I will admit that I cried. I just simply could not keep the emotions in.

That's not to say that things have left my mind completely. The worm of doubt is still there doing its thing, making the idea of 3 months without chemo a terrifying prospect. But I do feel relaxed for the first time in what seems forever.
Last edited by KeithKerry on Sat Oct 06, 2018 12:41 am, edited 1 time in total.

KeithKerry
Posts: 36
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sat Oct 06, 2018 12:40 am

toodotty wrote:
> Hi Keithkerry,
> That is indeed wonderful news, it is good to have something positive on the
> site for a change. Even better to get some normality back to your
> daughter's life.
>
> Sending you all a big happy hug,
> toodotty

Thank you toodotty. I am following your own story very closely. Especially as you were diagnosed around the same time as my Daughter and have tumours in the same places.

You've probably already watched this video. But when I get really down I watch it and remind myself that some people do 'beat the odds'. This lady is an almost 20 year survivor of stage IV pancreatic cancer. Despite her having the BRCA 1 & 2 genes it seems as if she only had chemotherapy that she supplemented with lifestyle and diet changes.

https://letswinpc.org/my-treatment/2018 ... ic-cancer/

I hope you keep on moving in the right direction toodotty.

kate2101
Posts: 65
Joined: Fri Jun 15, 2018 4:20 pm

Re: This cruel disease

Postby kate2101 » Sat Oct 06, 2018 8:36 am

Hi,

I’m so pleased to hear the brilliant news about your daughter. I know it’s always at the back of your mind but to get ‘normality’ back again must be a wonderful.

I’m at the scanxiety stage at the moment (first since diagnosis) and worrying about every little pain and niggle, hopefully results Wednesday after a two week wait. Agonising!

Love and best wishes to your daughter, enjoy your well deserved holiday!

X

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Sat Oct 06, 2018 11:39 pm

Hi KeithKerry,
Thanks for the link, I haven't seen this link but it completely ties into what I feel about approaching any cancer. I have changed my diet, I am almost totally vegan and exercise on a regular basis (I did 70 miles over 5 days on my bike last week.) Everyone thinks I look fantastic, despite having become totally grey with my hair just coming back. My skin glows and I am full of energy, I even had one nurse ask me yesterday if I was doing Botox!
I have had a two month chemo holiday, partly forced on me by two episodes in hospital with biliary sepsis but I have bounced back from these and my bloods have remained pretty stable despite the infections.
I have finally had my CT review which has shown shrinkage of all tumours, and some of them have disappeared on my peritoneum so this is positive news. So I am now back into chemo, Round 8 of Folfirinox yesterday which went well, feeling pretty well today the only side effect being the tingling of fingers and toes. Only four more sessions to go and then I might be able to get Nanoknife treatment on the pancreatic tumour. Also some time to review other options that are available.
I have signed up for the GI talk at the Marsden in November, see what clinical trials might be coming up and whether it is possible to hang on long enough for these!
I am so happy for you and your daughter, keep positive and enjoy every day.

toodotty