A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

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 7:20 pm

Thank you W&M, your opinion is worth a lot. I will look into chemosaturation, I have not heard of it before.
Xx stepuha

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Elaine123 » Thu Jun 01, 2017 11:40 pm

Hi Stephua I have been following your posts and praying that FF is successful and that as your body gets used to that you get less and less side effects which will enable you to build on your quality of life. Sardinia sounded so good , now to make positive plans for your next break away. I think you are so right to place your trust in your oncologist but still research other options ,I am sure she is recommending the most appropriate treatment. I can imagine how tired you were after your sons birthday party but seeing how happy the birthday boy was will have made it all worth it for you. Praying that as your body gets used to the FF that your side effects lessen and your amount of quality days increase. Life goes on here on a day to day basis that way I find it easier to cope. The weather has been beautiful so I am spending loads of time in the garden. Sending love and hugs and positive thoughts to you Stephua. 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 Jun 20, 2017 7:44 pm

Good evening,
Elaine, thank you very much for your warm message.
I wrote a post half way through the month when I was feeling low and then deleted it when I recovered.
Brief recap, I had an allergic reaction to Oxaliplatin, I became res and covered with spots. The nurses stopped chemo and gave me an antihistamin. The restarted the chemo at a slower paste when I recovered. After that a bag of chemo exploded and covered everything in the room. Nurses had to wear protective clothing and masks and spent 40 minutes cleaning the room. I had to go and wash and dry myself five times. I left the hospital at 5.30 after arriving at 8.30, so it was a very long day.
I did a CA 19-9 test half way through the month and it went up from 80 to 84 on Folfirinox.
More recent news:
I had a scan on Friday. It showed that one small met increased from 0.8 to 1.05 cm but the pancreatic tumor and two other mets reduced ever so slightly. Conclusion - stable position. I was very apprehensive before the scan, mainly because I didn't want a repeat of the vomiting situation. The nurse actually changed the contrast product and the scan went very well. I wasn't even nauseous. Overall I spent about 4 hours in the hospital waiting but I got the result the same day which was great.
I relaxed a little bit after the scan but CA19-9 had a surprise I store for me. It raised again from 84 to 105. So that's from the lowest of 54 two months ago to 105 last Monday. It went up by the same amount after both, Gem/Abraxane and Folfirinox.
The weird thing is that I have been feeling really well, the best since the start of treatment. My vitals are all within normal range and I am full of energy.
Last week I did two mountain hikes (5.5 km and 7.5 km up to 2,400 meters), I swam in the pool, rode a bike, did Pilates, I even climbed a mountain on Via Ferrata.
The results don't make much sense but here we are.
I saw my oncologist earlier today. She said that as the scan is stable, according to the protocol there is no reason to change treatment, especially since it is already the strongest treatment there is and there is nothing else available.
I was not happy to just continue with the current treatment. Something somewhere is growing and I wan to know what it is. I asked for a PET scan. There is a very long wait for the scan but she managed to squeeze me in for next Wednesday. As I have to be without chemo for theee weeks before the scan, my today's chemo was cancelled and I returned home. The chemo is now scheduled for next Wednesday afternoon the PET scan.
I don't need to leave the trial to have a one week break, so everything seems to work for now.
I also asked her to do another biopsy to collect material for tumor profiling. Again, there is a very long delay. If I can't get the biopsy in their hospital, I will go back to the Professor in Geneva and try there. She said she was going to try and get the biopsy Organised in France.
I picked up a cold so it is probably not a bad thing to have a week off. It will give me time to recover.
It is very hot here. I look forward to some rain and a drop in temperature. This heat is not very comfortable.
I hope to hear some positive news on the forum soon. If anyone has any to share, please do so.
Love to you all,
stepuha

Marmalade

Re: 36 yo adv pancr cancer patient treated in France

Postby Marmalade » Tue Jun 20, 2017 8:24 pm

Hi Stepuha,

It is very hot here too and making people miserable because we are not used to it and cannot sleep. I am keeping a cold water bottle (like a hot water bottle but filled with cold water) in the fridge and taking it to bed with me.

I think it must be very lowering for you to read about people passing on here especially when you are having treatments and feeling anxious. We all know what the odds are with this awful disease especially as many patients are elderly and less able to tolerate treatments but there are always exceptions, always people beating the odds, some for no apparent reason, people who take care of themselves and make their bodies as strong as possible and those for whom surgery and other interventions work remarkably well.

You are a bright and energetic woman so I hope that you can find the motivation to enjoy your life and make it a really good one. I know that is easier said than done but we do have choices. None of us know what is in store for us or how long we have. A disaster can strike at any time, we have all seen that in the last weeks. Your doctors seem to be fully engaged on your case and willing to get things moving for you which is good.

Your fortitude and determination is inspiring for all who visit here and follow your thread. Yes, some have passed and more will do so but at last we are seeing the odds improving. Little by little and this cancer is getting more research attention, faster diagnostics and improved treatments. I don't know what the future has in store for you, no one does but the present is good, you feel well and you must put everything aside so that you can relish this time and tell us all about your adventures.

I hope you have a pleasant evening and that a kind breeze will spring up to cool us all down!

Much love

Marmalade xx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Proud Wife » Wed Jun 21, 2017 12:50 pm

Hello Stephua

Speaking only from my own personal experience, I think you are right to be a little concerned about your rising CA19-9 markers. Most people tend to have their markers in the thousands and tens of thousands. My hubby never did. I honestly can't remember now what they were at diagnosis, I think 95 or 105. They went down to normal during folfirinox and then as soon as treatment stopped, they started to rise by about 10 per blood test, very much like your current trend. They were still only at the very low hundreds by the time he passed. It doesn't matter on the number, it's the trend so for my hubby, to go up by 10 each time was very significant....for him. However, please remember everyone is different.

Now, there could be a very good reason for the increase other than progression and you've also noticed the increase quickly so please don't panic or read anything negative in this post. I just believe on this forum we shouldn't sugar coat or we wouldn't be loyal, trusted forum family members. You've still got time to take action. Where my hubby went wrong was to listen to his oncologist who rated him a 0 -1 on the performance scale 2 weeks before he passed. That's how much faith I had in him but hubby didn't want a second opinion and was happy to go with what he was told so I had to respect that. His markers have been on the up since December 2015 and June 2016 when I lost him, so we are talking 6 months. You are in a totally different position as you want to take action quickly.

I personally get a little upset when I hear oncologists relying purely on scans. I've heard time and time before than scans can be behind time. Others will have more info on that so good for you that you've insisted on a PET scan.

You are handling this exactly right. TRUST YOUR INSTINCT. If you are not happy to carry on with current treatment, would it perhaps be a good time to seek a 2nd opinion in light of your oncologists views? Especially as you are currently feeling very well, apart from a cold. I think there are other treatments to try in the UK - not so sure where you are but I see no reason why not. My husband was offered a 3rd line treatment - something new at that time, after the fox and gem/abraxane but again can't remember the name. I can seek it out if you wish, I started a separate thread on that but... after a 3 month chemo break it was all too late by then and he was not well enough to try it. You are my lovely and your oncologist, in my totally non medical opinion needs to be throwing everything at it.

Please let us know how you get on. Private message me on FB if you want to chat off forum. Stay strong lots of love PW xx

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 Jun 21, 2017 7:27 pm

Stepuha

The 3rd line treatment that PW's husband was offered was Onivyde (irinotecan pegylated liposomal formulation). As you're currently being treated with Folfirinox which contains irinotecan - although in a different form - it may not be appropriate. It's usually given as 2nd line after Gem/Abraxane.

I'm afraid that good news is usually in fairly short supply here, quite possibly because the people doing well are too busy enjoying life.

I so hope that you continue to feel well and that the PET scan supports what your oncologist is saying.

Much love
W&M xx

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Thu Jun 22, 2017 3:58 pm

Thank you all very much for your warm words.
Marmelade - I think you cold water bottle idea is brilliant. I may just try it tonight. According to the weather forecast the temperature will drop next week. I am looking forward to it.
PW - I value your honest opinion. I don't have time for sugar coating. If I do have six months from the moment it started rising than I only have four months left. I have been researching other treatments worldwide but it is difficult to know what route to take without knowing for sure what is going on. I have been sending emails to various clinical trial teams and I am getting replied so at least I am starting a dialogue which should make it faster and easier later, I hope. what worries me is there is such a variety of experimental treatments and clinical trials that I would have no idea which one to choose. It seems that in my current status I would (on the paper) qualify for quite a few and I am willing and able to travel worldwide if necessary but I would need to do some serious research before making any decisions. Once I have the results f the PET scan and molecular profiling I will go back to the Swiss Professor and ask him for his opinion on future treatments. There is also, of course, Prof Nano in London that I can go back to.
W&M - thank you letting me know about Onyvide. I agree that this may not be suitable after FF.
I have received some good news today. My oncologist squeezed me for a biopsy next Thursday the 29th, the day after the PET scan. I must say I am quite impressed with her efforts. I like to see that things are moving and we are not wasting time.
I feel strangely calm today, in control. After all I am doing all I can in the situation. I have also been very productive with sorting out numerous administrative tasks that have been on my 'to do' list for ages. There are still a few to do so tomorrow will pass by quickly.
We have friends visiting over the weekend so that will keep me busy.
Wishing everyone a nice weekend.
I will be back with news next week.
x stepuha

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Quickasyoucan » Thu Jun 22, 2017 11:43 pm

Just wanted to say we are behind you all the way Stephua. My uncle by marriage also had pc and had nearly 5 years of v good quality life post diagnosis when he travelled the world and received an mine. Every day science is moving forward and as others have said you have youth on your side. Bon courage !

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Dandygal76 » Thu Jun 29, 2017 12:17 am

Lovely lady - let us know the scan results. If you want molecular profiling in the UK my dads trial place does it for what I recall is £1500 - £2000 (and a reputable place). The bonus being if you want to do nano then you can combine the nano and the biopsy (saving cost) and the prof in London is linked on the systems of the trial. We went to have this with dad (at same time as liver ablations) but because of where it was located it was decided it was too dangerous (it would leak into the hepatic ducts and cause spread - that is another dr debate out there!) and so we did not get it done (well they decided on the table not to do it). It would have been too late to get it done for dad anyway, we would not have made the results. There is also some debate as to whether it should be any new growth that is profiled and we decided to try and biopsy a new one. If you want the details then let me know and I will collate all the info and send it to you (and anyone else that wants it). An aside of an interesting fact - I found out only after dad that they do not scan the brain as routine in these tests and they cannot PET scan the brain. I thought we were covered on full scans and so if you get any neurological symptoms - make sure you are getting the right tests. It was our fault though because we thought the symptoms were chemo toxicity. A big aside - but useful for all those fighting to know. x

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Thu Jun 29, 2017 11:46 am

Thank you Quickly and Dandygirl.
I am resting in bed after the biopsy. What a week it has been.
My PET scan was moved forward to Monday, so that's all done and dusted. I received my results on Tuesday and it showed no further spread. Three remaining mets in the liver and a pancreatic tumor. All lit up very brightly. I should be happy baiut the result but I am not. The CA19-9 went up again during an extra week without treatment. It was 139 on Monday. The oncologist says there is currently no indication of spread according to the scans so no reason to change treatment but she also says that rising CA19-9 is bad newsman there is no stronger treatment out there.
I raised a question about ablation again and she said they wouldn't do it when CA19-9 is rising, the tumors need to be stabilized first.
I spent sometime thinking about it after I left the hospital and it didn't make sense to me, so i sent an email to her asking to have another appointment with their interventional oncologist and listing the reasons he gave last time as to why we should not proceed with ablation. Since that meeting the situation has changed. The chemo regimen I am on does not appear to be the best option as it is struggling to control the tumors. I don't really want to wait until cancer spreads to other organs as it will be even more difficult to control. The PET scan confirmed that there are only three remaining tumors from 9, so ablation seems possible. The biggest problem is infection risk but couldn't I take antibiotics to mitigate it? I didn't receive a reply and my oncologist is going on holiday, I will only see her now on 25th of July.
In the meantime I contacted a doctor in the French hospital which had a trial with Nanoknife. I asked him what he thinks about the proposal from Professor Nano. He quickly replied saying that Nanoknife is of no interest to me as a metastatic patient and I should continue with chemotherapy. It sounds like a mantra that everyone keeps repeating whilst ignoring the fact that chemotherapy is no longer effective. This is becoming very frustrating. The problem is that I need to find an agreement with them to have chemo after ablations/Nanoknife and to be covered in case there are complications.
I had chemo on Tuesday and that went quite smoothly. Last night I started feeling a sharp pain in my shoulder in the area under my port. The pain became sharper when breathing and turning to the side. I called the hospital and explained that I had had an incident of thrombosis almost five months ago. The doctor suspected pulmonary embolism and sent me off to the ER. I spent most of the night in the ER but they didn't find a cause. They did some blood tests which showed that pulmonary embolism was very unlikely and there were no infections/sepsis. They sent me home stating that as far as emergency experience is concerned, they have found nothing urgent and since I am meant to go to my cancer center anyway today, I should enquire here. I got home at 4.30 am and had to wake up at 7am to get into a taxi. I slept in the car for a couple of hors which helped.
My biopsy this morning went fine. I heard about the risk of spread but in my situation I think it is worth it. I need to stay in bed still until 5pm this evening. If everything is well, I will leave at 5.30pm. I can eat as from 4pm.
The problem is that the results of the biopsy (assuming they have collected enough material) may take up to three months. My oncologist said she would hurry them up but it may still be too long.
I the basis of the biopsy they will look for trials and other treatments, including immunotherapy.
Apparently, the Swiss hospital already confirmed during the last biopsy that I don't have microsatellite instability, which means that Pembrolizumab (Keytruda) will not be suitable.
I am going to have an appointment with their specialist dealing with profiling and these other treatments, I assume this will take place when results are ready.
I noticed last week some spasms coming back in my tummy, something I had had a lot when my stent was initially placed. I suggested the possibility of the stent being blocked but my liver enzymes are normal. I will have an appointment with the doctor who specializes in blocked stents in the coming weeks. I don't have any other symptoms, so this is probably not the cause but it will be good to discuss with a specialist.
Dandy, I don't have any neurological symptoms, i thought of that as well recently.
After all these excitementsI am looking forward to some rest and food. I will continue with the chemo for now until we find some other options. Fingers crossed, I have some actionable mutations.
Wishing everyone a peaceful weekend!
With love,
Stepuha

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Proud Wife » Thu Jun 29, 2017 7:06 pm

Hello Stepuha

Thank you for posting, I for one was wondering how you were getting on. I'm afraid I know absolutely nothing about ablation/nanoknife so I'm not even going to start to comment. However, I don't think it's right that you have to wait until 25th July for your oncologist to return from her jollies.

The plan for the future once the results of the biopsy are known sounds encouraging but in the meantime, given that you've got a 4 week wait, would it be worthwhile seeking another opinion? I agree with you about the chemo and not wanting to wait in case it might spread to other organs. I also agree the logical answer would be to take an all round antibiotic beforehand but of course, there's the risk any infection could be resistant and you would need a specific antibiotic, which couldn't be predicted in advance.

This is such a hard one....but I think, if I was you, I'd want to be throwing everything at this now
whilst you are healthy.

I hope by now, you will have eaten and be tucked up in bed at home. Take it easy for the next few days. Sending you masses of positive vibes, love and good wishes lovely lady xxx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Sat Jul 01, 2017 11:28 pm

Hello Stephua.

I'm sending you prayers, love, and virtual flowers.

Mo xxxx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: 36 yo adv pancr cancer patient treated in France

Postby Proud Wife » Sun Jul 02, 2017 10:53 am

And I'm sending you prayers, love and virtual chocolate hearts x

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Sun Jul 02, 2017 10:08 pm

Thank you for thinking of me, lovely ladies.
You are very sweet.
I am feeling a bit better. I slept a lot after getting home from the hospital.
My liver is still sore from the biopsy. I think it will take a week to get back to normal.
I spent the weekend with friends and family: a lot of friendly banter, good food and happy kiddies running around. It was very helpful mentally which is the main issue at the moment.
My oncologist booked me an appointment with a psychologist. I am not particularly looking forward to a discussion in French on how I feel but I will give it a try.
My appointment for the second opinion re treatment is booked for the 24th of July, my birthday. Swiss Professor is also on holiday. What a great time for the change in treatment!
Oh, and there is some good news. The pain in my shaulder has pretty much vanished. I have no idea why but I can't complain. The pain in the liver is enough. Just in case, I got a prescription for an ultrasound to check for blood clots and I have an appointment tomorrow morning after my blood test. I am not going to do CA19-9 until the end of Gem/Abraxane. I don't think it will do me any good right now.
I hope everyone is well and had a nice weekend.
Love,
stepuha

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Sun Jul 02, 2017 10:55 pm

Proud Wife thinks that chocolate is the answer to everything.
She might be right.

Stay strong Stephua, glad you're feeling a bit better today. Must have been my virtual flowers that did it.

x