36 yo adv pancr cancer patient treated in France

[joanna1975]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Guest]

Absolutely brilliant news, couldn't be more pleased for you. Thank you for sharing x

[stepuha]

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]

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]

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

[stepuha]

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

[WifeampMum]

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

W&M xx

[Veema]

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

Keep at it.

Vx

[Proud Wife]

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]

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]

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]

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

[WifeampMum]

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]

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]

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