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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Mon May 01, 2017 1:15 pm

Hello All,
Just to keep up with some positive news on the forum, I spent my Saturday cycling around Lac de Bourget (almost 30km) in beautiful sunshine, surrounded by amazing views. A friend of mine organized the route, booked a super restaurant for lunch and drove me and my bike to the location. I felt awesome. Experiences like this are priceless and I am very grateful to my friend. We finished off with a barbecue and lots of yummy salads at ours.
One of my favorite things to do when I start feeling better after chemo is a trip to a supermarket called Grande Frais ( recently opened in our area).
It has a great selection of fruit and veg, all of which looks so fresh and smells delicious. The strawberry season has started and their strawberries are sooooo good. My husband laughs at me if he happens to accompany me there. I have this wide baby smile on my face.
I was very happy to discover that my body is so used to Gem/Abraxane that all the side effects disappear two days earlier now, so I get three full days of feeling great each week.
I am going back to the hospital tomorrow. My white cells are a bit low, hopefully this will not stop the chemo. I am starting G-CSF on thursday, so white cells should be fine by next week's session.
I am getting so much pleasure from simple things these days. Just going for a walk makes me happy.
Kids have been great, constantly giving me hugs and kisses. It just brings tears to my eyes every time.
My son is in love for the first time (he is almost 6). He is so sweet when he talks about his girlfriend (more happy tears for mummy). I guess it is another milestone that I am alive for. The next one will be his 6th birthday later this month.
Onwards and upwards.
Wishing everyone a happy week!
With love,
X stepuha

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 » Mon May 01, 2017 2:02 pm

My love back, Stepuha, and I hope your wide baby smile has plenty more reason to show itself this week.
W&M xx

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Veema » Mon May 01, 2017 3:23 pm

You're doing great...so pleased that you are able to do all these things.

Keep at it.

Vx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Proud Wife » Mon May 01, 2017 6:22 pm

Again, a lovely to post to read! Keep them coming!

I can visualise that supermarket Stepuha and my mouth is already drooling! The French don't sell the rubbish food we do here! France has always been one of our most favourite places to visit because of the cuisine. Many a time we've walked through French markets and just oohed and aaahed over the delicious offerings. My son adores French cheeses and saucisson (spelling?). He would happily eat that with a chunk of bread over a hot meal any day. My hubby the same too.

I am so happy to hear that you are getting some good days too. I hope that your face aches constantly......because you continue to have the most massive wide baby smile!

Good luck for treatment tomorrow. Go give Pandora (our nickname for PC) a bloody good thump in the face and tell it to go play with the traffic. On a motorway.

Lots of love and best wishes coming your way
PW xx

P.S. in response to your previous post, my husband was being treated under private medical insurance so cost was not an issue for maintenance chemo. The issue was his lazy oncologist who just did bare minimum. xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Tue May 09, 2017 12:07 am

Hi Stephua it was great to read that your holiday was a success and that you and the children had a wonderful time. I was also delighted to read that your scan results were good and that your c-19 markers were down. I am just taking life one day at a time right now and missing Pete constantly. I also miss being on the forum as over the past five months I felt involved in everyone's journey and missed hearing how everyone is coping and sharing in their highs and lows. I was pleased that as your body is getting used to the chemo that your feeling good days have increased which will be a welcome boost for your family too. Wishing you the best of weeks. Take care
Elaine.
X

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Tue May 23, 2017 11:14 am

Greetings to everyone from sunny Lyon!
Elaine, it is so lovely to hear from you. Welcome back to the forum!
I am in the hospital waiting for Folfirinox to start. These days I get a pill that puts me to sleep during FF and that it makes it somewhat easier.
I had a great month during Gem/Abraxane cycle and an even better week of chemo. I am amazed with how much energy I have. I had to have an injection of iron after my last chemo because my red cells count was low. That seemed to have worked well. I was very busy and ticked off all the chores on my checklist.
I went away to Sardinia this last weekend, drank champagne on the beach and swam in the sea. The weather was wonderful, the food was delicious and the company was fun. I almost forgot I was sick.
Of course, as it happens with PC, we never know what the results will show.I came back from my holiday to an unwelcome news of raised CA19-9. It jumped from 54 to 80. This if the first rise after the last 5 consecutive drops, so, understandably, I am very worried.
All my other tests are fine and I am fit enough to go ahead with FF today. My oncologist says that we can't make any conclusions on the basis of one CA19-9 result and have to wait for the next one together with the scan. I know that CA19-9 is not always reliable, so I sur have to wait and see what the trend is. I may ask the lab to do a CA19-9 test in two weeks time and pay for it privately. Of course, this will not necessarily help as I am doing FF this month. I will have to wait at least six weeks before any conclusions can be drawn.
None of this is completely unexpected, I am in month 8 since the diagnosis. I was hoping that Gem-Abraxane would work a bit longer. It did really well wit helping CA19-9 drop.
Last week I had a meeting with the Professor of Radiology in my hospital. Again, the meeting went exactly as expected. He said that I was on the best treatment possible for my stage of cancer. He doesn't recommend doing any localized treatments at this stage, mainly due to the fact that the risk of infection in patients who have a stent is 50%. If I get an infection I cant continue with chemo. He is not refusing the local treatments completely, he just doesn't think that now is a good time to do it. He wants me to get the most of benefit from chemo.
I have to say, now that I got used to the chemo, it offers me a pretty good quality of life, considering the circumstances. I am feeling well, I am not in pain, I can eat and exercise. It does make sense for me to continue with chemo as long as possible (as long as cancer doesn't become resistant and my body can tolerate it).
I discussed the upcoming clinical trials with my oncologist.
The IMM-101 trial has started recruiting in the UK should start shortly in France however my oncologist is not very optimistic about it. She has not seen much success in immunotherapy in digestive tumors.
I also briefly mentioned the Phase B1 trial by Bayer involving Anetumabe Ravtansine but she said it was too early to think about it.
If there is progression on my next scan on June 16th, they will consider a biopsy and molecular profiling. Let's hope more trials will open I the next few months for specific mutations.
It feels like this recent development has been a punishment for getting too relaxed and enjoying my life. I know, it is just PC, but it feels that way anyway. I am back to crying again. This uncertainty is driving me crazy.
Sending everyone love and positive energy.
X stepuha

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Proud Wife » Tue May 23, 2017 11:59 am

Hi Stephua

This is just a blip sweetheart. Progression is not the only reason why CA19-9 markers go up. I am the first to ring alarm bells when they do BUT...it's only happened once so far so try not to panic just yet.

Even if it is progression, you've caught it really early and by virtue of the fact you are starting the furry fox, that's the very best you can do - in my non medical opinion - as it's a fresh attack on the little *&+!*

I am not surprised in the slightest though you feel the way you do but it's NOT a punishment. The more you can get out and about and enjoy yourself, the stronger your body becomes to cope with treatment.

Personally, I would save your money and wait for the further tests on the 16th of June. I'm not convinced they'd be accurate given you've just started a new treatment and that's exactly the right thing to do if there is progression.

Positive energy right back at you brave lady xxx

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 » Wed May 24, 2017 10:58 am

Hi Stepuha,
Positive energy coming your way from me too. As you're well aware, one CA19-9 rise does not necessarily = progression, and I'm keeping everything crossed that it has a benign cause. I went into panic mode recently because of my hubby's rising level (from normal to 39 then to 124) but the next test was 50 something. I think in his case the rise was due to raised bilirubin. When his bilirubin fell, so did his CA19-9.
It is such a hard one to know whether to have it tested again so soon, I would just say rely on your gut feeling. And I agree with PW about the importance of getting out and having a good time - you must banish all thoughts of punishment and live life to the full, not just for you but for your family too. None of us know what tomorrow will bring so make the most of the good times.

Much love
W&M xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Wed May 24, 2017 10:31 pm

Darling Stephua,

(1) it's NOT a punishment. Getting out and about and enjoying your family is the best thing you can do.
(2) you've done Crying and it didn't help, did it ? Now trying doing Not Crying and see how that feels.
(3) you are a very positive role model for people with this awful disease.

Love, prayers and e-hugs.
Mo

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Veema » Wed May 24, 2017 11:58 pm

I am so pleased you are able to get out and about and do stuff...make those memories, take loads of photos...I always took hundreds of photos wherever we went, even if it was just down the park...Nige used to moan all the time because of all the photos I took of him, they're all we have now...memories often fade, but looking at a photo brings it all flooding back.

I too wouldn't overly worry about the rise in the CA 19-9 levels, just keep an eye on them. I still have the printout I was given of Nige's when his had come right down to normal levels. Hope the folfirinox doesn't cause you too much grief and you can continue living your life to the full. Champagne on the beach...amazing. Go girl.

Vx

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Fri May 26, 2017 8:44 am

Thank you ladies! You always say exactly what's I need to hear.
Wishing everyone a lovely weekend!
X stepuha

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Dandygal76 » Fri May 26, 2017 9:47 pm

Hey lovely. I know we are chatting off line sometimes but we can both be hit and miss (just so people know I am not being harsh below in my views). Also, It is important we vocalise this openly sometimes. I concur with what everyone has said so far. However, you are in a bit of a tricky one with the Ca 19 markers changing and we have to be frank as well as encouraging...

a. of course we have now heard of blips... but they are rare (in my experience). I do not agree with the drs in the extent that if the trend has changed then it does not matter and can wait
b. I think get an inbetween test has to be the same lab and preferably the same scientist if you can get that or at least send the sample to the trial scientist. There are variables between both scientists and labs (so I understand) and consistency is most important. So, if your blip has occurred through a different variable then that can influence your decision making.
c. majority are not blips (if with same scientist)
d. It is a lottery and we are all biased by experience but I have said before to you.. the trend is important.
e. if the trend is up and down then surely one chemo is working and one is not - I would try and find an oncologist and not a scientist to work this out if it was me - is the potential change due to furry fox or abraxane? You need an on the ground decision on this. I know I disagreed with dads scientist support but I am not the only one to experience this.
f. call PCUK to discuss above but hopefully they will feed back.

I am not sure you should be looking for new trial for now... perhaps try one chemo or the other if your markers fluctuate as to what experienced oncologist says? My own biased experience is to guess the chemo that is working (if one is) and go for the other treatments of trial re nano round that now (if the trend continues or was with the same scientist / lab). I have purposely put this here rather than message you privately. It is an experience / research that requires not only a peer review but a PCUK view if the advice is inept.

I am no expert but I think you need to make informed decisions based upon all views (and counter views).

Keep enjoying life my lovely lady. No one is punishing you and pc has no brains. I believe in positive thinking. It is wonderful you are enjoying the things you love. I will message you but treatment two pennies worth opinion are best here.

Much love.

xxx

raun cesar
Posts: 30
Joined: Thu Mar 02, 2017 9:22 am

Re: 36 yo adv pancr cancer patient treated in France

Postby raun cesar » Mon May 29, 2017 7:40 am

Hi Stepuha, Sorry to of the situation you are in. It great to hear of your holiday, and scan results. I wish you all the best for the chemo. Hugs and Love

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Mon May 29, 2017 9:00 am

Hi DG,
I am always happy to hear your frank views :-)
a. Of course I know that blips are rare but still possible, especially in the presence of a stent. For the moment there is no trend as such, only one increase, not very substantial but it should not be ignored in any case. I am already doing all I can (changing the chemo regimen) until I get more results and establish a trend.
b. I always use the same lab for my blood tests. I can't choose the lab technician but the lab is the same.
e. I only ever see my oncologist, I don't communicate with the clinical trial team. My oncologist is the Head of Digestive Tumors in my cancer center and I have come to trust her opinion over the last 7 months. She may be very prudent in her approach but I don't think she will give me an ill advice.
The rise in CA19-9 was on Gemcitabine/Abraxane, after the forth month of this treatment. As per the trial, I switched to Folfirinox last Tuesday.
I think the first answers I will get will be after the scan on June 16th. My oncologist says, if there is progression on the scan, we will do another biopsy for genetic profiling.
If Gem/Abraxane stopped working, I will most probably just continue with FF.
f. I will call the nurses when I have some more news. For now I will just continue with FF as planned. I had a chat with a PCUK nurse some time ago. Her point of view was that with this disease it is always good to have some treatment options available, so I should stick to the current treatment whilst it is working and keep other options for later.
I have to say, over the last few months I read a lot of stories about complications after Nanoknife/ablations which are not guaranteed but still very possible and can be quite nasty. I really don't want to put chemo at risk until the tumors have been stabilized. The success of ablation and Nanoknife for stage IV patients is also not very well evidenced. The Nano Doctors I the US and Germany refuse to preform it for stage IV patients and this is in line with what Professor of Radiology in my cancer center is advising. He says it works well for localized tumors but there is too much risk of infection for metastatic patients and I should try and stabilize the tumors first. Apparently, my cancer center is considering to introduce Nanoknife but again only for localized tumors. My cancer center also offers HIFU treatment, SBRT and ablation, so there are options available once the tumors have been stabilized and I still hope they will.
As for the trials, there are some very encouraging results out there for specific genetic mutations but there are still very few treatments for these available. The IMM-101 trial combines immunotherapy with a standard chemo regimen, so it is quite prudent and can potentially offer a benefit over a standard chemo regimen. The problem is that if I wait until both main chemo regimens stop working, then there is no point in joining the trial. It showed positive results in Phase I. I don't think I should discount it completely for the benefit of Nanoknife/ablation. I think all options should be considered.
I had a few tough days last week and I am not completely over the side effects of FF but I am feeling better and it is good to know that in three days I will be back to normal. Unfortunately, I seem to have picked up a cold. Hopefully this will be resolved quickly.
We had my son's 6th birthday celebration yesterday. Another milestone. I spent the whole day running around and was totally exhausted at the end of the day but I felt good to be able to do it and it was a success. I have one very happy birthday boy at home.
As soon as I relaxed in bed last night my nausea and sickness came back, topped up with a nose bleed. A reminder that things are not quite normal.
I have calmed down now, no more crying. It seems that the best way to calm myself down is to reassure myself that what I am doing in terms of treatment is the best thing I could do at the moment.
Wishing everyone a peaceful and sunny week ahead.
Thank you DG for your detailed input and raun cesar do your wishes.
Sending everyone lots of love and positive energy.
xxx

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 » Mon May 29, 2017 11:42 am

Dear Stepuha

Belated happy birthday to your son!

For what it's worth I think you are going about things in absolutely the right way - staying well-informed, working with your oncologist whom you trust (for good reason) and seeking other expert opinions when appropriate. Respect!

I'm so pleased to hear that you're feeling calmer. Maybe that spell of crying was necessary to get you to this easier state. I don't think it's good to bottle it all up and crying is a good release.

I was interested to see a recent news item about Chemosaturation being used to treat liver mets in PC patients. It's now carried out at a private hospital in the U.K. I don't have any personal experience so can't vouch for it, but if you want to consider another option it's maybe one to look at.

http://www.privatehealth.co.uk/news/spi ... s-1152286/

[PCUK - apologies if the above link is inappropriate, if you need to take it down I can provide the link off-forum to any readers who would like it.]

W&M xx