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PCUK Nurse Rachel R
Posts: 27
Joined: Thu Jan 25, 2018 10:52 am

Re: This cruel disease

Postby PCUK Nurse Rachel R » Tue May 22, 2018 3:47 pm

Hi KeithKerry

That is so good to hear that your Daughter is keeping so well. Well done her.

As you say another treatment down. I do wish you all the best as she heads towards the re-staging scan.

With Kind wishes

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

KeithKerry
Posts: 34
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Mon May 28, 2018 10:27 pm

Another one done. Next Friday is a rest week. My daughter is glad of that break as it is the school holidays. She's still doing great, looks well, and incredibly, she eats without Creon at times still with no ill effects.

I find all of this incredibly difficult much of the time, especially when alone. And yet she still smiles, she still laughs, and she carries on with her life with an enthusiasm and determination that continues to make me feel both humble and grateful in equal parts.

If she can do that, then so can I.

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

Re: This cruel disease

Postby Veema » Tue May 29, 2018 8:08 pm

She has entirely the right attitude. I am convinced that it was his positive attitude that got my husband as much time as we got.

I hope she enjoys the school holidays.

Vx

KeithKerry
Posts: 34
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Tue May 29, 2018 10:38 pm

Thank you for the encouragement Veema. It really does help to read friendly and supportive words from people that have been through this same awful situation.

KeithKerry
Posts: 34
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Wed Jun 06, 2018 9:05 pm

Another week successfully negotiated. A week that included another dose of chemotherapy and an appointment with an Oncologist. Another week where I once again was filled with such pride for the fierce independence and determination that my daughter displays in the face of such a daunting situation. Another week when I am again humbled by such a depth of will to keep living life normally and productively.

The original plan was for 6 treatments and then a scan. But because she has coped with the chemotherapy so well, is still asymptomatic, has entirely normal bloods, and is eating well, the decision was to have a further 3 treatments first, and then a scan. If there has been no tumour growth after that, then a further 3 months of the same regimen, and then another scan. Then we go from there.

That news had an amazing effect on us all. It is of course still an absolutely awful situation, but the tentatively hopeful news of at least the possibility of some respite from the progression of the disease, coupled with a decent quality of life, is not to be scoffed at. I have learned that one thing at least from all of this heartache and pain.

If you are in a similar situation to us, just remember that being positive can help everyone involved, at least from a psychological point of view, and encouraging and supporting your loved one to fight can be therapeutic for you just as much as it can be for them.

I know that there are no guarantees with this disease and I fully understand that it has as many downs as it will have ups. At times it seems like the former outweighs the latter, but take everything positive that you can. I want my daughter to understand that we will help and encourage her to enjoy her life in a productive and rewarding way for as long as is possible. In return she clearly wants us to enjoy her life with her.

Nobody knows what the future holds for any of us. Live it and love it as the saying goes.

All for one and one for all.

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Thu Jun 07, 2018 12:50 pm

Dear Keith,

This is really positive news, and its great to hear how well your daughter is tolerating the chemo.

I am sure it is reassuring for you all, and as you say, take every positive you get.

Wishing your daughter all the best for her future treatments.

Kind regards,

Jeni.

Jeni Jones,
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

toodotty
Posts: 136
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Mon Jun 11, 2018 4:23 pm

Hi KeithKerry,
I am a Stage 4 PC sufferer, probably diagnosed at about the same time as your daughter. I have two (nearly adult) boys and I was a very fit 55 year old who enjoyed the outdoors, cycling, swimming, horse-riding etc. I too was overwhelmed by the diagnosis as my only symptoms were weight-loss and indigestion. Like you both, I also spent a great deal of time researching on the internet and was shocked at how little things have progressed and how terrible the survival rate is compared to the rest of Europe.
I fully understand your own suffering, having accepted the situation my main thoughts were "thank goodness it is me and not one of my children", that would truly break my heart.

I would also totally agree with your comment about "being written off". Frankly having just digested the fact that I probably have terminal cancer, then I do not want to discuss "end of life care". Not there yet thank you very much, I have still plenty of living to do and like your daughter need people to "bat for me".

HOPE is a very important part of the treatment, but my own experience of the NHS is that this really isn't fostered in any way. Even my cancer specialist asked if I wanted to go ahead with chemotherapy because it only works in 30% of cases and then for a short time. Again talk about, just go home to die .....

I too have looked at treatment abroad and sent my first CT scan to Heidelberg hospital and they responded within a week, 6 rounds of Folfirinox, re-scan and then review for surgery. They do not diagnose Stage 4 PC as palliative only and have a much more pro-active approach to both trying to save patients or at least extend their lives. Consequently, many more of their patients either survive or live for longer. I am planning still to follow up this option. It will probably have to be self-funded, but due to advice from the lovely people here, I checked my Life Assurance and it pays out for terminal illness, which they promptly have done. So I still have options and more importantly HOPE.

My own treatment has not been as smooth as your daughters, and I will post separately about this. In the meantime, keep your HOPE alive and keep battling on.

toodotty

AndAde
Posts: 29
Joined: Thu May 18, 2017 8:51 pm

Re: This cruel disease

Postby AndAde » Thu Jun 14, 2018 6:33 pm

Never give up hope.

My husband was diagnosed with metastatic cancer in his lungs December 2016. Its been a rough ride. Last summer his treatment was nearly withdrawn as he was so desperately ill. We persevered and this week we were given the results of his latest scan.... no sign of any tumours!!!!

We are overwhelmed with gratitude and sheer relief to be given this extra time together xx

KeithKerry
Posts: 34
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Tue Jun 26, 2018 10:28 pm

Thanks for the messages toodotty and AndAde

We've had another missed chemo session due to low Neutrophils, but this time it wasn't the demoralising experience that the first one was. We know more about how things work now and can deal with that sort of thing a lot more calmly. This Friday is a rest day, then another two sessions before the first scan since the baseline scan was done many weeks ago. We need to get that particular thing out of the way so that we know whether this first line of treatment is actually making a difference.

We've also had a lovely family holiday that we all enjoyed. I myself had a beautiful moment with my daughter that I will cherish forever. It was just a simple cuddle, but it was an entirely spontaneous and unplanned private moment during which everything was forgotten, and just for that precious minute she was my little girl again snuggled up against my chest, with my chin resting on her prickly little head. No words exchanged, just a quiet, warm, affectionate moment in time for a parent and their child.

toodotty, thank you for the message regarding hope, it is very important to everybody to have at least something to hope for. I would really like to know more about your quest for private treatment and what you found out about how they approach PC in the Heidelberg hospital. Would you be willing to contact me off forum to pass on some details please?

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Wed Jun 27, 2018 3:24 pm

Dear Keith,

Thank you for your beautiful post, so heartfelt and touching.

Sharing your special cuddle with your daughter was a very generous thing to do - it really is those "small moments of joy" which make all the difference.

May there be many more Keith.

Best Wishes,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

toodotty
Posts: 136
Joined: Sat Jun 09, 2018 4:17 pm

Re: This cruel disease

Postby toodotty » Thu Jun 28, 2018 8:48 pm

Hi KeithKerry,
Happy for you to contact me, Jeni has my email and I am happy to share with you. Re Heidelberg, it is really easy, they have a contact form you can fill in. This link will take you there.
https://www.heidelberg-university-hospi ... -pancreas/
I filled in the form, sent them my CT scan and anything else and they come back within a week. In one week their immediate response was 6 rounds of Folfirinox, re-scan and then re-submit to them. It is worth doing just for a second opinion.
I also spoke to Jeni yesterday about Nanoknife and Protonbeam therapy and she was extremely helpful, so do use the help line. These are also options that I will be exploring.

I too have made great progress in the last couple of weeks, although I am still on an almost vegan diet, I have managed to gain 2kg in weight this week. This is partly due to me realising that I have suffered a lot of muscle loss to both my legs and my bottom, (which has disappeared), so I have been on the exercise bike. I have done 35 miles in 5 days, including 10 miles yesterday and today. Body is recovering well, and apart from sweating buckets I felt as fit as a fiddle.

Met with my Oncologist today, which I will post separately, and on for Chemo round 4 tomorrow. I am thinking of getting a mug printed, instead of "Keep Calm and Carry on" to "Keep Hoping and Carry on" to present to him ..... :roll:

Virtual hugs to you and your brave daughter,

Toodotty.

KeithKerry
Posts: 34
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Tue Jul 31, 2018 6:54 pm

Thank you for the information Toodotty. Also thank you to you too Jeni. This forum is a great place to come to and is one my favourite places to visit when I'm feeling a bit lost and overwhelmed.

I'm not in the least bit superstitious, although I haven't posted here for a while for fear of jinxing things. I am also not at all religious, but I have prayed to everything and anything for some positive news. We had a snippet of good news just over a week ago. The tumour markers dropped from a little over 6,000 to just over 200 in around 8 weeks. The first drop was >5000 in the first month alone.I did not want to share that at the time for fear of jinxing things.

Today we had the results of the first scan since the baseline scan in April. Most of the suspicious nodules in her liver have gone completely, there's just a small number left now. The largest patch on her liver has shrunk from 3cm to 2cm, the other patch has shrunk from 2cm to 1cm. The primary tumour (3cm x 3cm) has not changed in size since March. But the most important thing is that it has not grown and appears on the scan to have lost some of its density.

I had no idea that my daughter had tumour markers that were that high. I am glad that I did not know because I think that at the time I would have freaked out about that and so would she. We did not know about the nodules, only about the two patches on her liver. Likewise I am glad that we did not know at the time. This was probably one of those times when just enough information was just enough.

So, another 3 months of Gemcitabine and Abraxane, and then another scan to see what is going on. The only side effects that my daughter has experienced through all of this is some tiredness and diarrhea, both of which appear to be a result of the chemotherapy. She is eating really well and very slowly gaining weight. Apart from that she goes on with her life in the same positive way.

She is my little hero and she knows that she is dearly loved by all of her family. Onward and upward.

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

Re: This cruel disease

Postby Veema » Tue Jul 31, 2018 7:51 pm

Lovely news.

Vx

kate2101
Posts: 61
Joined: Fri Jun 15, 2018 4:20 pm

Re: This cruel disease

Postby kate2101 » Tue Jul 31, 2018 8:27 pm

Hi,

So lovely to hear some good news, lots of love to your brave daughter, you and your family xx

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Wed Aug 01, 2018 4:37 pm

Hello Keith,

Thanks for posting this absolutely fantastic news!

I am so happy for your daughter, and yourself, and the family - you have been amazing going through this together.

This really is a fantastic result - after 3 months of chemo! lets hope the next 3 cycles will make a good fist of the remaining cancerous areas.

A great cause to celebrate!

Very best wishes from all the nurses,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707