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JaneTravers
Posts: 9
Joined: Wed Apr 19, 2017 4:34 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby JaneTravers » Tue Sep 05, 2017 7:00 am

Steph is
I follow your thread with great interest and wish you all the luck in the world on your trial. I too believe it is a miracle potion. Like you, I really want to live! I have had 4 rounds of Folfirinox, 8 more to go. However my youngest daughter is getting married on Saturday so with the blessing of my oncologist, I have delayed the 5th round until after the wedding so I feel as well as possible on the big day! She was getting married next July but when I was diagnosed in March she decided to bring it forward - we had 10 weeks to plan it, and it has been great fun! Just hope I can eat, as that is one of my main problems.
Anyway, good luck on the trial and keep positive, like you I make the best of every single day xxxxxx

patrigib
Posts: 40
Joined: Sat Mar 05, 2016 7:53 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby patrigib » Tue Sep 12, 2017 7:15 pm

Hello Steph,
Been following your thread. Just wanted t know how you are. Wish you get good results from your trial.

xxx

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Fri Oct 13, 2017 3:19 pm

Hello All,
It is time to update you on my progress. Unfortunately it is not good news.
I had a scan earlier today. The scan showed a considerable progression of the tumours. It also showed a thrombosis on the level of my portacath.
An urgent meeting was arranged with the clinical trial doctor who confirmed that treatment had not worked at all. On the top of her head she mentioned a trial which includes Abemaciclib but it is randomized, some patients get Gemcitabine or Capecitabine. It is a Phase 2 trial. Whether or not I will qualify for it remains a question. My case will be discussed at an MTD meeting on Monday.
On Tuesday I have to go back to the hospital to do final blood tests and scan biopsy to exit the current trial. I will also see a clinical trial doctor and my main oncologist to discuss available options.
There is more bad news, the results of genetic profiling have finally been published. I don't have any actionable mutations. I only have KRAS and P53 which can't be treated at the moment.
I asked to have a celiac plexus block to help with back pain. This will also be discussed. For the moment I am taking Morphine but it makes me very tired and nauseous.
The last two weeks were very difficult. The treatment has really taken its toll on me. With constant high fever and vomiting I lost 6.5 kg overall since the beginning of treatment. I had no quality of life and couldn't do anything with the family. In a way I am looking forward to stopping this treatment.
So all I can do for now is wait for Tuesday and hope they will offer me another treatment. If not, I can try and look elsewhere but I realize that time is running out.
I also asked about going back to chemotherapy and this will also be considered at the meeting. The problem is that I can't tolerate any strong chemo and the weak chemo may do nothing in the current situation.
I asked the doctor about hospice. There aren't hospices as such in France but palliative centers connected to the hospitals. I asked for a meeting with one such center near me. I want to make sure that everything is ready is things turn for the worst. The doctor told me it is probably not the time to talk about hospice if they can find me another treatment that works. Otherwise things will happen quickly.
We have booked a short holiday away in Disneyland Paris followed by a day trip to Paris and kids are very excited about it. I hope I will feel well enough to go.
I am sorry to be the bearer of bad news. I so wish I had something more positive to share.
Love to all,
stepuha

Veema
Posts: 475
Joined: Mon Feb 02, 2015 5:35 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Veema » Fri Oct 13, 2017 8:24 pm

It's a flippin' shit disease and I am so sorry that things aren't looking better for you. You have always been (to us at least) nothing but positive and the way you have continued to live your life sticking two fingers up at it shows what a determined young woman you are...I hope you can continue to do this and further treatment is offered if that's what you want.

Much love.

Vx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Fri Oct 13, 2017 11:12 pm

Stephua, I can't tell you how sorry I am at your news, and how much I admire your refusal to just give up and accept it. It's good to hear that you and the family have a little treat to enjoy, and I'm so glad that you are able to plan happy times for your husband and children despite all the ghastly treatment you have endured.
If anybody deserves a lucky break it's you, Stephua. Veema is right, this is a nightmare of a disease. It sounds so feeble to say that all I can do is pray for you, but I will.
With love, Mo

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Wife&Mum » Sat Oct 14, 2017 7:52 am

Dearest Stepuha

I read your post last night and was too upset to respond, I just couldn't find any words. I still don't have the words (as the rest of my post proves) but want you to know that I'm thinking of you and wishing with all my strength that you get better news over the coming days.

I so hope you get to Disney, I so hope you get more effective pain relief and the nausea and tiredness abate, and I wish so much that a treatment path is found that works for you.

Loads of love and hugs to a most amazing and inspirational lady

W&M xxxx

sandraW
Posts: 1027
Joined: Thu Oct 31, 2013 5:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby sandraW » Wed Oct 18, 2017 3:33 pm

Stephuna, Just sending a big ((((hug))) this bloody shitty disease, brings so much heartache it is relentless, it was bad enough losing my husband at 68, at least he had had a reasonably long life but for young people in your position its just devastating.
I do hope you got to Disneyland with your children, and that you all managed to enjoy it, its a magical place for all. I also hope that the news, when you saw the Doctors yesterday, was better than you expected. and they could offer you further treatment options. Even though I don't post much now I keep up with everyone's posts every few days, and am thinking of you all,
going through this, always. Most people post on behalf of someone else which is bad enough but
its you that is having to face this, and you are doing it with great positivity. I just wish I could do more to help, sending love and strength sandrax xx

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Wed Nov 08, 2017 4:58 pm

Good evening to all patients and carers. First of all, thank you all so much for your lovely comments and all your support. It is very heartwarming to read your messages. I am sorry I don’t reply to each of them.
Here is what happened during the last few weeks:
On Monday 23rd I saw my original consultant who reveiwed my blood tests and gave me a ‘go ahead’ for treatment with Gemcitabine/Tarceva (Erlotinib). I was given the first infusion of Gemzar on the same day and given a prescription for Tarceva in tablets to be taken at home once a day.
The following day we departed to Disneyland. The trip went relatively well. Kids had a blast. I couldn’t really do much so we rented a wheel chair from them and my husband was pushing me around with kids sitting on top of me. It worked well at the end and there was no was I could do it without it. After two days in Disneyland we also spent a day in Paris. This was all much more easy going as we had a car and just took a cruise on the Sienne. The weather was lovely and I really enjoyed myself. Understandably, kids weren’t as excited. The toughest part was to drive there and then it rather be driven with two kids in the back. It took us 6 hours each way with traffic. Overall I am happy we did it, happy memories made and lots of photos taken.
On Monday the 30th I went back to the hospital for the 2nd Gemzar infusion. Upon arrival I was told that I didn’t have an appointment that day but the following day, the wrote the wrong day on my appointment card. Eventually the squeezed me in but that meant extra four hours wait for chemo. My red cells dropped further so I asked for the iron infusion. I was given that and Zophren but just before Gemzar they checked my temperature and it was 39.7. So panic started, chemo cancelled, lots of bloods taken, port no longer available for use, I got hospitalized and remained there until today. Bacterial culture blood tests were taken on Monday but not delivered to the las properly so next morning they were not food enough to analyse. Back to more pricking. My veins are very week now and hidden. Every day I had nurses poking and prodding me because tests had to be taken from different places. On Tuesday night they confirmed that staphylococcus group infection was found in the port. I was put on antibiotics. Two days later they were changed as there was no reaction. The fever continued rising every 5 hours with accompanying vomiting to follow. I was transferred to ta different wars for the weekend who didn’t know ay if my history so I had to fight with them about missing prescriptions, timing of the drugs, etc. No one wanted to listen. I was also put on hydration and the following morning woke up all swallen with odeama of the eyes and swallen feet. I kept asking to stop hydration but the answer was no because doctors weren’t around. On Monday I was returned to the previous ward, where I was told that staphylococcus infection was probably not the cause of fever and. In fact, may have shown up as a result of contamination. The new bacterial culture results came in negative. Antibiotics were stopped and corticoïdes started with an immediate positive effect. Fever dropped and I started feeling better. Finally someone noticed my swelling up and stopped hydration. They also prescribed me with diuretics to try and get rid of all that extra 4kg in liquid that I am holding.
In the meantime I started having diarrhea. I can only assume that this is a side effect of Tarceva. I didn’t have this issue before because Morphine constipates me and Tarceva has the opposite effect so they worked more or less on balance so far. More panic, bacterial stool test, etc.
All this time I was just waiting for ‘what next’. Next was a rash on my chest and face, probably also Tarceva related and supposed to be a good sign so I am not going to complain much about that one.
And, of course, they came and told me that I was going to miss another session of chemo and my next session would be in two weeks. This made me very angry. I complained, I cried. I talked to anyone I could and managed to get them to authorize to give me chemo before my departure. Just to clarify re. Infection, the finally concluded that the fever was caused by cancer, so called neoplastic fever ??? More reasons to give me chemo, I would say.
So I am home safely now, I have no idea what tomorrow will bring but I will just take it as it comes.
I hear kids arriving, better give them a massive hug.
Big hug to you all,
stepuha

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Didge » Wed Nov 08, 2017 6:06 pm

Oh what a palava! I well remember Rob telling the nurses that if he were given a blood thinner (standard procedure for all in patients on arrival) it would kill him and the nurses quoting the “not unless the doc agrees and they are not here”. I do hope things improve soon. Lots of love to you and your family xx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Quickasyoucan » Thu Nov 09, 2017 8:35 am

So glad to hear an update Stephua. You have been in my thoughts recently. With best wishes Quick

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Wife&Mum » Thu Nov 09, 2017 10:44 am

Big hug back Stepuha. Plus mega-wishes for comfort, calm and no more nasty surprises.
Lots of love
W&M xxx

PCUK Nurse Dianne
Posts: 265
Joined: Tue Aug 14, 2012 2:29 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby PCUK Nurse Dianne » Thu Nov 09, 2017 3:01 pm

Dear Stephua,

We wanted to add our thoughts and encouragement to you and your family along with your forum family. You are so upbeat, stoical and unselfish in sharing your experience and also supporting others on this forum at such a difficult time.

Your amazing courage and determination are incredible and we admire you greatly, such a great inspiration for fellow patients at this time.

Our thoughts are with you too at this tough time.

Jeni and Dianne

Sandiemac
Posts: 67
Joined: Tue May 10, 2016 10:27 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Sandiemac » Fri Nov 10, 2017 7:47 pm

I am lost admiration of you. Jeni and Dianne are quite right. You are incredible. You are an example to all fighting this awful disease.
Much love, Sandie xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Sat Nov 11, 2017 4:57 pm

Just sending love and hugs.
Mo

Veema
Posts: 475
Joined: Mon Feb 02, 2015 5:35 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Veema » Sat Nov 11, 2017 11:19 pm

More love and strength from me...

Vx