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

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joanna1975
Posts: 13
Joined: Wed Mar 22, 2017 1:55 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby joanna1975 » Thu Mar 30, 2017 10:43 pm

Hello All ,

I'm new to forum and although not diagnosed yet ( awaiting for a diagnosis) I must say that you Stepuha and you Ruth inspire me so much and I follow your posts as I'm at similar age ( soon 42) and have a 10- year old child. I find your posts very inspiring and if I'm diagnosed I'll try to stay as positive as you, really, really wishing you both ( and of course for everyone else on that forum) all the best, lots of health and success in your treatment. Will start my own post once I find out, but I'm scared to bits... Joanna
( Sorry if I make mistakes - I'm Polish and my English is not perfect).

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Fri Mar 31, 2017 8:50 am

Hello Joanna,
Welcome to the forum and thank you for your kind words.
I understand completely how you feel but try not to think of the worst. Fingers crossed, the diagnosis will be different.
If not, this forum has a lot of experienced and caring people who will be here to support you and the nurses at PC UK are excellent.
Big hug,
Stepuha

joanna1975
Posts: 13
Joined: Wed Mar 22, 2017 1:55 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby joanna1975 » Sat Apr 01, 2017 10:09 am

Hi Stephua,

thank you very much for your reply, it's good to know that I'd be able to talk to someone who is is similar situation . As I said I'm not diagnosed yet but waiting for my MRI scan results and I'm convinced that I have PC which scares me to death. I'm also falling into depression and have to go to GP to get some help as I know I need it, otherwise I won't have a strength to fight a disease when diagnosed. I'd really want to be in touch with you as I feel so close to you because you also have small children and we're at similar age. Please stay in touch, thanks, Joanna

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Dandygal76 » Sat Apr 01, 2017 11:17 am

Hey lovely. If the vomiting is not under control then the gold standard for this is Emend. It is an excellent anti sickness drug but I have found you have to push for it. Did you hear the Dr M talk on timings for the nano? I will have a google now but I think this is a cause of tension on when to go for it, I wish we had earlier with dad but I know he was stubborn and would have waited for his next scan. Summer is coming and I have a feeling things will just get better and better for you all. I don't care what these trials say... I am with PW firmly on the front that CA19 markers matter way more often than not (I have still yet to see someone come back and say they didn't).

Joanna - depression and PC go hand in hand There is much evidence that suggests even pre diagnosis that it is more prevalent, let alone the thought of diagnoses. It would be lovely for you to start a thread so we can help you on a more personal footing.

We are also all linked on FB and e-mails so feel free to ask my e-mail address if you want some off forum help. x

joanna1975
Posts: 13
Joined: Wed Mar 22, 2017 1:55 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby joanna1975 » Sat Apr 01, 2017 12:15 pm

Hi Dandygal76,

Thank you for your post and would love to join you, so I can be around people who know so much about that disease. I'm so lost now, don't know what to do and being able to get advice from you all lovely people will be so much help. How can I get your email and join the Facebook group? Will start my own thread like you suggest, thank you so much, Joanna

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Sat Apr 01, 2017 12:45 pm

Many thanks for your recent posts on my thread, Marmelade, Mo, Elaine and DG.
DG, I wasn't able to find Dr US Nano's speech online, neither could I find any publications relating to the meeting in question. I will keep looking out for them.
Joanna, If you want to talk, ask PC UK nurses via support@pancreaticcancer.org.uk to pass on your email address to me and we can arrange a call or just be in touch by email.
I don't know if I am extra sensitive to the subject but I seem to come across pancreatic cancer too often for my liking these days. My friend's dad has just been diagnosed and it appears he is not going to have treatment. Another patient who was diagnosed at the same time as me and who is also young has recently been told that there is nothing else the doctors can do (chemo didn't work and he is not well enough for immunotherapy). Not to mention the number of patients in their 30s-40s that I come across in Facebook groups. Stories like these make me feel grateful for my current situation. I am in my 6th month since diagnosis and feeling well except for chemo side effects. I also realize more and more every day how important it is to try and eat well and stay fit. Having all these clinical trials is one thing but qualifying for them is another.
Wishing everyone a peaceful weekend.
Love
stepuha

joanna1975
Posts: 13
Joined: Wed Mar 22, 2017 1:55 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby joanna1975 » Sat Apr 01, 2017 6:22 pm

Dear Stepuha and Dandygal,

I've sent my contact details to the email you posted, hopefully you'll get my email and phone number soon and will get in touch with me.
I'm very grateful that you replied to me and I'm sure you'll give me a strength that I need.
That's really saddening knowing that o many people are getting that horrible disease, especially that usually it's found too late too treat...
Stepuha and Dandygal, please email me or text me , would love to talk to you.
Have a peaceful weekend too,
Love,
Joanna

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Mon Apr 24, 2017 8:20 pm

Good evening all,
It is that time of the month when results come in and anxiety levels go through the roof.
I had my scan and blood results earlier today. I was so anxious before the scan that I was physically sick before leaving the house. At the scan I told the nurse that I get nauseous if Iomeron is injected too fast. She said it had to be injected fast to do the scan properly. She gave me two cups of water to drink before the scan and off I went. Unfortunately, the product was injected too fast which caused me to be sick all over the machine, not a pretty situation to be in. I was worried the scan was not done properly and I would have to do it again. Even though I had to do it again, the part which required the injection was successful and did not need to repeated. We had to wait for 40 minutes for the results and the radiologist invited us for a quick discussion. He said it was good news, the tumours were stable. There is no growth, if anything, there may be a slight reduction in the size of liver mets, not new mets. I was relieved to hear that but it took me several more hours and a couple more sickness episodes before I could calm myself down. I went for a long walk which helped. The blood results came in at the end of the walk. I was worried about my blood results as two weeks ago my creatinine level was high after the first furry fox session. I thought the second session would do even more damage to my kidneys. Surprisingly, my blood results are pretty much all within normal range. The CA19-9 marker dropped again from 62 to 54. It always drops by about 10% with furry fox, so 54 was exactly the figure I expected. I must say after all the stress today I am feeling worse than what my blood results show. It just shows what our mind can do to our bodies. My weight is stable. I lost two kgs with the last session of furry fox but maintained the weight with this last session.
I am seeing my oncologist tomorrow. I am not expecting any surprises, just usual: ' the treatment is working, we should continue'. As much as I am frustrated about the situation and not being able to do more, it really seems that the treatment is working, the only question is, of course, how long it will continue working.
Last week my family and I went on holiday to the South of France. It is the time of the school holidays, so we took the opportunity to go away. Despite me being sick for the first few days we had a wonderful time. The weather was really warm, we spent a lot of time discovering the region, eating fish, sea food and ice cream and chilling on the beach. Kids were very happy. In the second half of the week I felt so well. I almost had to remind myself that I was still sick (two injections a day served as a good reminder).
It has become a norm that at the end of every furry fox month I feel a bit tired and bit low mentally. The idea of having to do this chemo for the foreseeable future is daunting. It definitely helped to go away and get distracted from the routine of chemo but it doesn't take long to start worrying about it.
I feel that I should continue with this treatment for now and keep all other options in the pocket. There is another clinical trial starting in our centre in July for the drug called Anetumab Ravtansine. It is good to see more options opening up based on the genetics of the tumour.
I would like to see my CA19-9 dropping down to normal range and at that point I will start looking at other options again. If the same downward trend continues I will hopefully be at this stage in a couple of months.
Of course, I know that things can turn bad very quickly and with every month I am getting closer to the point when chemo can stop working. Luckily, today's results have shown that I am not at that point yet, so I have something to be happy about. Who knew 6 months ago that news like that would make me happy.
I has been very quiet on the forum since the passing of Ruth and Pete which was a big shock for me and many others. It would be nice if more forum users posted their stories. We all learn from others' posts and every piece of positive news really helps to keep going.
Sending love to everyone.
x stepuha

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

Re: 36 yo adv pancr cancer patient treated in France

Postby Justamo » Mon Apr 24, 2017 9:04 pm

Stephua, it is so good to hear from you. Your break in the sun sounds so good and I love the way that you refuse to be defined by your illness and continue a 'normal' life in spite of it. Your results all sound acceptable, especially your CA19.9 markers and it's reassuring to know that your discomfort and sickness from the chemo has paid off by your condition remaining more or less stable.
I've been a bit subdued by the loss of Ruth and Pete and find it difficult to write, but I was so pleased to read your post that you have spurred me into tapping at the keyboard again.
Much love,
Mo

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 Apr 24, 2017 9:13 pm

Thrilled, thrilled, thrilled to hear your results Stepuha!

I know it's so easy for me to say but try not to worry about the fox stopping working. Some people have had 30+ cycles and you never know what developments/trials the near future will bring.

I'm only sorry that you had such a horrid experience today. I don't know about the speed of the contrast dye but perhaps they could have been a tiny bit more considerate. Delighted you managed to go on holiday, I hope many more follow. It's really lovely to hear your excellent news on the day that Ruth was laid to rest. Yes, I think both deaths hit us hard but....we pick ourselves up, we dust ourselves down and we keep trying to support one another in memory of those on the other side of the divide. It's what they would want us to do xx

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: 36 yo adv pancr cancer patient treated in France

Postby sandraW » Mon Apr 24, 2017 10:25 pm

Stephua
That's all great news, its lovely to hear that you got away for a nice break in the sun.
Just enjoy life, its easy for me to say but there really is no point worrying about what might happen, as it won't change anything anyway.
As you say there are new things in the pipeline and while you can stay fit and healthy, there is always the chance of more new treatments becoming available.
Great news on the reduction in those pesky CA19's too, take care and enjoy the summer love sandrax xx

Marmalade

Re: 36 yo adv pancr cancer patient treated in France

Postby Marmalade » Tue Apr 25, 2017 12:07 am

Absolutely brilliant news, couldn't be more pleased for you. Thank you for sharing 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 Apr 25, 2017 11:42 am

Thank you, lovely ladies, for your kind comments.
I had an appointment with my oncologist just now. I am going to write everything down before I forget.
She was pleased with my scan and CA19-9 results. I bombarded her with questions today and she seemed to be open to discuss them. She is going to refer me to the Professor of radiologie who specializes in local treatments of tumors to discuss ablation of liver tumors. I was very happy to hear that. Apparently, another radiologist from this center is currently doing practice in the U.K.. I would be helpful to talk to him/her in English. Of course, ablation would mean leaving the trial and my oncologist still says it is too risky to do so now. Currently there is no expectation of Abraxane being made available in France. The proposal submitted to the government is on hold until the results of the election. She says it is difficult to continue with the same regime without altering it. Apparently, even on this trial, eventually they have to stop either Gembrax or Folfirinox because patients can't tolerate it. She doesn't want me to lose access to Abraxane if Folfirinox has to be stopped. Knowing how badly I tolerate Folfirinox, I kind of agree. In any case, it will be good to talk to the interventional radiologist and get a second opinion.
I also asked her whether chemo would be stopped if things were stable and CA19-9 were in the normal range. She says that under the standard protocol they would stop chemo and review every two months. The trial doesn't have an option of a chemo break. She is suggesting to keep discussing after every cycle, depending on the CA19-9 results. She says that sometimes the trend in CA19-9 is more accurate than the scan.
I asked her about operations for stage 4 patients. She said only two of her PC patients were operated and they are alive, so the operation was successful. However, she said they were on Folfirinox standard treatment, not on this trial. She says the incidence of PC is increasing all over France and they can't point out the reasons for an increase. They thought it was due to smoking, obesity, alimentation but the data doesn't support it. Basically, they don't know why it happens. This reminds me of a recent research which found that the majority of PC was caused by random DNA mutations. I was so obsessed about eating healthily and exercising to stay healthy and ended up getting a possible random DNA mutation which caused the worst possible type of cancer. I always knew I was unlucky but not to that level.
Finally, I asked my oncologist for a referral to a proctologist to deal with my ongoing piles problem but apparently they don't have any specialists in the center, so I will have to look elsewhere.
Overall, I feel a bit more positive after my conversation. It helps to lower expectations before the meeting (I know it sounds silly) :-)
Onwards and upwards.
Xx 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 Apr 25, 2017 8:55 pm

I think you have a very wise oncologist Stepuha. I also very much agree, based on my own husband's experience and also the last 10 months on this forum supporting others that CA19-9 markers are probably the most accurate way of assessing what's going on, rather than scans which I'm sorry but I don't think always tell the whole story. Your CA19-9's are brilliant and I'd simply focus on that for the time being.

The other point I'd like to make and I've made it often before, is that I don't agree with chemo breaks at all. Provided the patient is tolerating chemo well then at the very least, maintenance chemo should be given. This is something that I regret very much not pushing for in my hubby's case. I saw his markers going up as soon as chemo stopped (having asked if he could have maintenance chemo as soon as he'd finished his 12 cycles of furry fox and was told firmly no need) A 3 month chemo break allowed the cancer to become so aggressive, he went down very quickly thereafter.

I make these comments purely as a lay person and are not intended as any medical advice but....anyone with PC is between the devil and the deep blue sea. I know some will argue that continued chemo can be too toxic but we all know what happens when treatment stops. With continued treatment, there is hope. With continued treatment, there is always a chance of extending life until a new treatment or cure is found.I just feel very strongly that the patient should have that choice of continuing without a treatment break, provided of course they are told the risks -v- potential rewards.

I shall now step off my soap box!! It's just something that is really close to my heart after personal experience. xxx

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

Re: 36 yo adv pancr cancer patient treated in France

Postby stepuha » Wed Apr 26, 2017 8:47 am

Thank you, PW. I must say, after reading a lot of other stories I tend to agree with you on the subject of continuing chemo. It is just a shame that I am not part of the trial that combines all possible options for fighting this disease. Chemo alone will probably keep me alive for a while, unless I succumb to an infection. It is very rare that chemo can cure it. There are some stories out there but very few of them. I just don't want to accept that I can't cure it and all I can do is having chemo until I die. I do want to wait for other options to open up but they are all at such early stages of development that it will take years until anything curative is developed and joining any of these Phase I trials is a stub in the dark. I am all for continuing chemo but with other added options. The problem with that is that I will only have one choice - Folfirinox. If that fails or I can't tolerate it, then I just have to hope that the other added treatments will kill cancer before this happens. There is this IMM-101 trial with chemo that gives acces to Abraxane but it has yet to start recruiting. If I knew this was available as a second option, I would make a move. Without it it is too scary to rely only on Folfirinox, knowing how badly I tolerate it. I know they can reduce the dosage but that makes it less aggressive which is not what I want. And, of course, once I am in the standard treatment territory, the oncologist is likely to stop chemo and evaluate once the markers drop further. I would be OK to do that if there was no evidence of the disease but with all these tumors being stable, the beast is just sleeping there until it wakes up. Let's hope more interesting trials start soon and show some strong results.
I am sorry that your husband wasn't given an option of maintenance chemo. I think such decisions are more about the budgets than actual patient's needs.
X stepuha