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Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Feb 05, 2017 6:56 pm
by Proud Wife
Hi Stephua, brilliant news on the markers!

How is the furry fox being administered, do you have a port? One thing I'd like to reassure you on is if the arteries take a little longer to clear, don't worry. We will told that the fox at full strength can also be given once every 3 weeks without it making much difference on effect. In actual fact, my hubby chose to have it every 3 weeks and sailed through it. He only got into trouble when it was stopped.

Much love xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Tue Feb 07, 2017 10:34 am
by stepuha
Thank you Elaine, thank you Proud Wife, my chemo is administered via a port and it is the arteries above the port that are blocked. It is good to know that furry fox is also effective if taken every three weeks. I sent my results to my oncologist yesterday. Her secretary called me in the afternoon saying that I can take all the injections as prescribed and I can continue with chemo next Tuesday as planned (if blood results are in order that is). I reached a low point with nausea and diarhhea yesterday and feeling better today. Time to get out and start being active again.
x Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Feb 08, 2017 3:57 am
by Dandygal76
Hun, I have your e-mail address... my head is up my butt at the moment. Send me a link to your FB and I will link you up properly with us all... but we swear and everything so be warned (Sorry PCUK!). We can help support you more on there if you want it. x

Re: 36 yo adv pancr cancer patient treated in France

Posted: Thu Feb 16, 2017 8:42 am
by Elaine123
Stephua you will be so relieved that is the FF finished and you can start building up your strength again I really hope you have a good week , Spring is just round the corner and as you said the sun gives you a lift so you can look forward to as you said normal days with the children. What comes next Stephua in your treatment plan now the FF is finished. Is that the trial over? I think you are wise to wait the two months before deciding on nano knife by that time the report may be out and Give you more insight into it all and it will be easier to make an informed choice. Thinking of you and wishing you a great week after your chemo.
Elaine
X

Re: 36 yo adv pancr cancer patient treated in France

Posted: Thu Feb 16, 2017 9:14 am
by stepuha
Hi Elaine,
With this last FF I have completed two cycles of the trial. The trial can continue for 9 cycles altogether (18 months). I am now waiting for the scan on Tuesday 21st and the next CA19-9 test on Monday 27th. My oncologist is away for two weeks for the school holidays, so I will not be able to discuss results with her until the beginning of March. She did say that six months of chemo was the minimum before we could consider other options. So the next step will be Gem-Abraxane for a month starting on February 28th and then another month of FF. Hopefully Prof Nano's Nanoknife study will be out by then. I found out that Nanoknife is also available in one hospital in France but they only use it on borderline resectable patients as part of clinical trial to see if Nanoknife can shrink the tumour away from the critical blood vessels to make it eligible for an operation. As I am and advanced PC patient, I don't qualify. It seems like Prof Nano in London is the only person who does Nanoknife on advanced stage PC. I also found out that our cancer centre has Cyberknife equipment, so I want to see if that can be an option for me. There is also a new immunotherapy+chemotherapy clinical trial with IMM-101 starting in our cancer centre any time now, so that could be another option.
The thought of me having to do this chemo trial for 18 months makes me depressed and I am getting impatient.
I just wants these mets to disappear and the tumour to be cut out. Wishful thinking, eh?
'Die monster, die' as my children chant.
Sending love to all patients and carers.
x Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Thu Feb 16, 2017 11:01 am
by Ruthus
Hi there
I have been meaning to post a longer response to your for a while now but as you well know time passes with appointments and treatment etc. I have just read your thread from start to finish and there are so many similarities to my experiences and story.
The way your symptoms presented and how you were diagnosed is very similar to myself. I also experienced lots of negative attitudes from GI doctors and nurses regarding my outlook. Then I googled PC on the internet and that didn't help either. I felt totally overwhelmed and out of control. I recall asking the GI doctor whether my tumour would ever become operable and his reply was a firm no. It was totally devastating.

The cancer hospital I am being treated at has a slightly better attitude but still I've experienced negative outlooks and if I hadn't of pursued other options I strongly believe I would not be alive today. I have had to be constantly one step ahead of the game. When I was first diagnosed I read lots of people's stories on this site and I took all the advice I could from peoples individual experiences. I found that the people who seemed to be more proactive into having other treatments such as ablations or nano knife were the ones who lived longer.

I take a whole mix of vitamins which include: bitter melon capsules, milk thistle, a good probiotic, multivitamin, high potency tumeric, high potency slow release vit C, echninacea, Vit D3 drops (for digestion and absorption), Iron, omeprazole and 75mgs of dispersable aspirin for prevention of blood clots. I take all of these in the morning and then take creon with everything I eat. I have no idea if these help but after I had the whipple in May 16 I lost a lot of weight and absorption and digestion is a big issue for me so taking them makes me feel pyschologically better if nothing else.

I felt out of control many times in the early days of Folfirinox treatment. I had been told that there was a slight chance the Folfirinox would shrink the tumour and make it operable but the chances were very low. I had to wait until my mid treatment scan results last March. I hated taking the Folfirinox as after 9 cycles I would literally sleep for 3 days and feel awful. I recall thinking I could not continue with the regime for much longer. My CA-19 markers reduced all the time throughout treatment and my Oncologist said he would not believe it if the mid treatment scan showed the cancer had spread. This was positive as I was worried it would have spread.

I was disappointed after the mid treatment scan as although there was no disease spread the tumour had not shrunk and was still inoperable. It was at this stage I consulted Prof London re nano knife and also the Prof in Germany re surgery. When the Professor in Germany said he was confident he could remove the tumour there was no doubt in my mind that this was something I had to do. It gave me such a boost to see both of these Professors as for the first time I had some positive news and attitude. Although I have since developed liver mets I have no regrets having the whipple operation. The primary tumour was taken out and that was such a relief. It also meant I could focus on trying to do something about the mets which for me was two lots of liver ablations in October. The results of my scan in November last year indicated that the ablations and gemcap chemo was working as the liver mets had greatly reduced in size from 1.4 cm to 0.4 cm at its largest and one met had disappeared.

I am now on a treatment break and like you have a scan very soon with results at the start of March.

It sounds like you are on a good chemo regime. I have an appointment today with the Phase 1 Clinical trials team at my cancer hospital to discuss current trials. I suppose this is preparing for further treatment if possible. I will ask about the immunotherapy trial which has been mentioned.

I totally understand when you said you found yourself bursting into tears and feeling exhausted talking about your treatment and updating people. I found that I cried daily for around 2 months post diagnosis. I am now 16 months post diagnosis and don't cry anymore!! strange. It is exhausting though having to constantly update people with where you are upto. I know that my friends are genuinely concerned and I have a set of very close friends who I see regularly and share everything with. However I have had people that I don't regard as close friends offering to go out for coffee and a walk. It's very kind of them but I don't necessarily want to use my precious time with people I wouldn't have gone out with before I was diagnosed. I say no to people I don't want to spend time with and I also keep my responses short when people ask for updates and I don't particulary want to share it with them.

It's difficult though as like you have said you can't plan long term. We have had invites to parties and weddings and we have had to say it depends on my health and we can't say until nearer the time.

I also suffer with anticipatory nausea before treatment and have been sick twice now and the thought of treatment. I usually dose myself with strong anti sickness tablets before treatment. I had a phase of nose bleeds but this seems to have stopped. My hair has become thinner which I'm hoping will stop now I am on a treatment break. I also get dry cracks on the soles of my feet which can be painful. I use a good moisturising cream on these. At times I had to have my Folfirinox treatment 3 weekly and my CA-19's continued to fall so I think it is still effective if given three weekly although I know it's better if it can be 2 weekly.

I reassure myself that I am young and was previously very physically fit so I try and ignore the statistics. I also reassure myself that the statistics may not truly reflect the current picture and there are new trials coming out all the time. We are all individuals and no one's story or pathway is the same. I am praying that your scan results are positive and remember there are other options out there such as nano knife and ablations.
You are obviously responding to treatment which is very positive. Sending you love and hope Ruth xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Thu Feb 16, 2017 2:00 pm
by stepuha
Thank you very much for your reassuring and detailed post, Ruth. It does sound like we have a lot of similarities in our experiences.
I am so happy to hear that you are having a break from treatment. Hopefully the scan you are waiting for will bring you good news.
Sending you love and positive energy.
xx Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Fri Feb 17, 2017 8:24 am
by Elaine123
Thank you Stephua for explaining your treatment plans to me it makes it a lot easier for me to understand. I get so wrapped up in Petes treatment that I forget there is many options out there. I guess this is going to be a very fraught week for you with the scan and c19-9 marker results due. I hope that you get the best of news. No wonder you overthink with all those options open to you, it would be well worth pursuing the cyber knife to see if that is suitable especially as it would take place near home. I was pleased to see that a trial for the immunotherapy is starting , I have been reading articles about that and it seems that it will be the way forward in the future it looks very promising. The dilemma is what one to choose it seems to be the only way round it is researching over and over the ins and outs of all the options and then making the big decision. I know DG is in shock just now after her Dad and she will be grieving and have loads to do and think about but she has done so much research she may have information that you haven't come across yet that would help you. There is also the vast knowledge base our nurses have and that could be another source of evidence to consider. I really wish you all the best Stephua in making a decision. Have a great weekend with the children . Love and hugs to you.
Elaine
X

Re: 36 yo adv pancr cancer patient treated in France

Posted: Fri Feb 17, 2017 10:47 am
by stepuha
Thank you very much Elaine,
Big hug x

Re: 36 yo adv pancr cancer patient treated in France

Posted: Sun Feb 19, 2017 7:54 pm
by Proud Wife
Wishing you the very best of luck with your scan and markers Stephua. I love your children's chants. We used to call "IT" Pandora and in my mind, I would always punch Pandora in the face.

I'm sure it's going to be a tense nervous wait until you get your results but I will be praying that you only hear good news xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Mon Feb 27, 2017 3:52 am
by Dandygal76
Hey hun, so much to say but let us know the markers tomorrow and we can go from there. I think we need to watch these markers and things need to change. I agree with PW. Not just one change but the trend. All these medics and scientists spout they do not matter but I am yet to see one case (and I have a vast experience in this) that comes back and says... oh it was nothing and it went away. I think the 5% that have no markers and the odd infection case has skewered them into thinking something that does not translate to reality on the ground.

You are young and you have lots of positives and hope. Things are changing. The cancer with dad was gone on many fronts. The pancreas tumour was flat, the original lesions gone.

I am tired now (thank god, as it is 3.50am) but I will catch up and you can e-mail me anytime and I will respond.

xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Tue Feb 28, 2017 8:03 pm
by stepuha
Good evening to everyone,
Sorry for going quiet. It has been a very confusing week and I wanted to wait for my meeting with an oncologist and CA19-9 results before posting in panic. My mind feels like it is going to explode.
Dear Dandy, welcome back. I was waiting for your return quietly as I didn't think it was fair to bother you at this time but you have been missed and I hope you will keep popping in to the forum.
My last Folfirinox recovery was pretty much the same as prior sessions. I stopped being sick on day 9 with Monday being the hardest day. I really need to sort out this sickness issue. I may send an email to PCUK nurses ( I can't call their number from outside of the UK).
Going back one day, I had my scan on Tuesday: overall conclusion - the tumours are stable. One liver met increased by 2mm, another - reduced by 2mm, no new mets, no comment regarding lymph nodes. The radiologist was a bit rushed as didn't expect to have to give me the report on the same day. This was a different scanner to the one used previously. Given that measurements are so small, i believe there is a possibility of human error but not on a substantial scale. If there was a substantial reduction, the error wouldn't make a difference. That scan signalled the end of my pancreatic cancer 'honey moon'. I am obviously not in the miracle category, the mets are not going to disappear with the chemo, this clinical trial is not a wonder combination, so that's plan A out of the window. It is now more likely that I will be doing chemo until the rest of my life. I read more and more about patients who decide to have a break from chemo and this allows the cancer to spread very quickly. Now...I am trying to be as positive as I can but what a depressing outlook!
Trying to re-assure myself I thought of Prof Nano who had previously mentioned that I had 7 mets in the liver. The french radiologists don't count the number of mets. I sent my scan results to Prof Nano on Tuesday eve to his gmail account ( as previously requested by Prof Nano). As I received no response, I went on the website of the Princess Grace Hospital and noticed that the secretary email address was no longer a hospital registered dress but a gmail account and the landline number was replaced by a mobile. I called the mobile and heard a voice mail which directed me to another mobile number. I tried that second number and didn't get through. I may be paranoid but this doesn't look very professional. Prof Nano replied on Saturday ( I read his email before bed - big mistake). He said that the effect of the chemo had stopped and I had a risk of it spreading further if I did nothing. That was shock number two. I didn't think that stable tumours meant that chemo had stopped working. He didn't ask me for the CA19-9 results or how long I had been on this chemo regime. In January he told me to keep an eye on the trend in CA19-9, so I was waiting for yesterday's blood test to see if it was still a downward trend.
After digesting this piece of news I decided to be patient and wait for my meeting with an oncologist and the CA19-9 results. Yesterday's blood test was good enough to continue with the chemo and CA19-9 dropped again from 141 to 97. The oncologist I saw concluded that the chemo is working and I should continue with the same regime.
This was not my oncologist (she is on holiday) but I decided to test the waters about other treatments with him.
Earlier last week I found out that our centre has the technical ability to perform ablation, microwave and Cyberknife, so I asked the oncologist if I could microwave/ablate the liver tumours. As expected, his response was about the lack of scientific evidence of ablation/microwave being effective for this type of cancer. This is not part of standard protocol, hence it is not recommended. When I insisted saying that at my 36 years of age I was not exactly a standard pancreatic cancer patient and I was prepared to take risks, he said that it could be considered at a later stage. He recommended to wait until the standard treatment was no longer effective. He reminded me that I would have to leave the trial and lose access to Abraxane. In any case, it is my oncologist who has to make that decision. My concerns with waiting until the standard treatment stops working are: 1. The longer I do the chemo, the weaker I will get. 2. If ,when the chemo stops working, the tumours suddenly grow too much, I may not qualify for ablation/Nanoknife. 3. My standard treatment already includes the two main chemo therapies, so once that stops working, what do I do? The other chemo options currently available are weaker versions of my current treatments (i.e Capecitabine is FU in a pill form and that is part of Folfirinox. I won't even mention Gemcitabine).
With all these considerations in mind, I still tend to agree with the oncologist. Based on the overall picture, I don't think that chemo has stopped working, even if it didn't work as well as I wanted. I am going to do two more months on the trial, as previously suggested by my oncologist. Then I am going to persuade her to ablate my liver tumours in Lyon. This will mean leaving the trial and continuing with Folfirinox or its modified version. After the liver tumours have been dealt with I will go for Nanoknife, unless the liver tumours disappear and operation becomes a possibility (wishful thinking). This is my plan B. I need help with evidence to provide to my oncologist. Has anyone heard of studies done in connection with ablation of liver mets for pancreatic cancer? Someone mentioned a study on the same in Amsterdam.
Prof Nano's study has yet to surface. I asked him about it again and he ignored my question. I wonder if there is a problem with the study, which is delaying it from being published.
One thing I concluded is that despite all the research, alternative treatments and second/third opinions I need/want to be able to trust my oncologist to guide my treatment. She has the real life experience in treating patients. I can only find theories, studies or personal opinions of patients. I panicked earlier last week because my platelets dropped considerably and I was convinced that the blood thinner was the cause of it. This had been suggested by the emergency doctor who diagnosed me with with thrombosis. I wrote to my oncologist and she replied saying it had nothing to do with the blood thinner. It was the chemo which had caused the drop. I wasn't convinced at first but my next blood test showed that platelets returned to the normal range. This is an example that shows that just because something makes sense to me, it is not necessarily right.
And my final conclusion is 'ignorance is bliss'.
On a positive note, I had 5 lovely days with my family after recovering from FF and before today's treatment. It just felt like we were back to normal life (except for the stress of results). I didn't have any symptoms. We went for hikes, bike rides, took kids to ski lessons, socialised with friends, went out to the restaurants. The weather was lovely and it just felt like we were on holiday (without going on holiday). One can't over-estimate the importance of these very few good days.
I hope all other patients are feeling as well as possible.
Wishing everyone a worry free night.
Love,
Stepuha

Re: 36 yo adv pancr cancer patient treated in France

Posted: Tue Feb 28, 2017 11:26 pm
by Proud Wife
hi stephua

I have read your post and I definitely agree with you the treatment IS working. you would get so much benefit talking to the wonderful specialist nurses on here. I would have been lost without them! Can I suggest you email asking if there is a uk landline number you. CAn call. If not, I'm happy for my mobile number/email to be given to you by admin and then I will try to find a way of conference calling if you wish, as a last resort, and I can disappear into a different room although I appreciate you might want to talk In Total privacy which won't be possible. Anything I can do to help, I will . It must be very frustrating but to be able to pick up the phone. You need to be talking not emailing. I'm going to sign odff now as on my phone, can loose all of this and making typos as the screen so small!

Sleep well xx

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Mar 01, 2017 2:30 am
by Dandygal76
Hey lovely, that is strange. I asked Prof L some quite hard questions over the last week and he has responded. He was the 1st one to tell us things were turning when the trial said carry on so don't dismiss what is being said and he is very short and blunt usually. I have felt sometimes i need to nudge him as I think he is spread thin. Try a firmer e-mail perhaps? E.mail him tomorrow afternoon.. I suspect you may get the answers you want. I will tell you that I found it better when I had professionals bouncing off of each other. In all our jobs we do not want the scrutiny of another professional. As for this study.. I know it was at peer review but if I look at it scientifically, I cannot see how it can be approved to publish. There is no baseline. Dad came to him after a trial and 12 months into trial treatment, others straight away etc. There is no comparable data. Saying that, I have seen some good results around it... are you on the nanoknife warriors group on FB. Like everything with PC, it works for some and not others. If you ever decide to do it though I am 40 minutes out of London by train so you can stay here to reduce your costs. Those CA19 markers going down though is excellent. You are a strong young woman and everyone stresses around scans and results. Go skiing and live around this - otherwise what is the point.

Re: 36 yo adv pancr cancer patient treated in France

Posted: Wed Mar 01, 2017 8:32 am
by stepuha
Many thanks PW and DG,
PW, I asked the nurses for the landline number to call from outside the UK but they replied saying they hoped that email correspondence would be acceptable, so I guess there is no such number. I must say, I would have been in touch with them more often if there was a possibility to call them. Organising a conference sounds as much of a hassle for everyone involved as writing an email but I appreciate your offer of help and will keep in in mind.
Dandy, I am a member of the Warriors group. One other member posted yesterday about his concerns. Apparently Prof Nano evaluated scans three times with different results and two other second opinion teams disagreed with him. Another person tried getting in touch and mobile numbers finally got answered by Prof who said he was in a transition period and his new secretary didn't work out. Whatever is going on, he needs to get himself organised. I can imagine that without a secretary he can't keep track of everything and things get confusing.
Did you get a letter from him after the consultation? At least I could take that to my oncologist. I never received one after my consultation. I raised a question about it in the latest correspondence but he ignored it.
You are right, I should write to him, give him more information and ask him if he is certain.
I agree that it is better to have professionals bouncing off each other. It worked for me to have the Swiss Professor involved. I am sure I get better attention from my oncologist because I told her I was consulting him. Only I just received a bill for CHF 3k from the Swiss hospital, double what I expected, and the biopsy they took did not result in a sufficient sample to do molecular profiling, so wasn't that useful. What Prof Nano is suggesting will cost me at least GBP40k (or 50k if they charge me as non-resident) and I honestly don't have that money. I am saving but it will take me some time until I can gather this amount. If my hospital can ablate the liver mets, then I will only have to pay for the Nanoknife and that I can afford. I have heard of good results with Nanoknife, mostly so in the US where it is done via an operation (not an option for me with the mets), so of course I prefer to take a chance and try it but there is a lot of money involved, so understandably I want to feel reassured that Prof Nano is the right person to do it. Thank you for your offer to stay at yours, I have some friends living in London who can host me and I also have to get back to France as soon as possible, in case there are complications.
I had my Gem-Abraxane chemo yesterday, it is so much easier for me than Folfirinox. I may just go skiing by the end of the week :-)