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Kerri9499
Posts: 11
Joined: Mon Dec 23, 2013 11:40 am

Mum's journey on Folfirinox so far...

Postby Kerri9499 » Tue Jan 14, 2014 12:32 am

Hi all.

On the 10th November 2013 my amazing, beautiful Mum was diagnosed with PC. After a week of feeling as though she had food poisoning and then 3 more weeks of lethargy, weight loss and quite simply just feeling 'not right' she was finally coerced into seeing the doctor. She then admitted that she was getting pale fatty stools, lots of belching and a bit of intermittent shoulder blade ache. Within a few hours she was asked to go to the hospital as her blood tests had shown high blood sugar levels and slightly abnormal liver function. At this point they thought it was diabetes. An ultrasound followed the next day in which they thought mum may have a gallstone, this led to a CT scan the day after that and then straight into surgery to have a stent put in. What they had seen on the scan was a tumor in the head/neck area of the pancreas which was blocking the duct, there were also a few very small nodules showing in the lungs. As far as they could see the liver etc looked clear.

We were all devastated as i'm sure everyone here can identify with, my Mum never gets ill! She is a very active 67 year old who at most had a bit of IBS so the news was and still is very hard to take.

Within a few days Mum's blood sugars had stabilised and she was taught how to inject insulin herself, then she was able to come home. Within 7 days of the CT scan we were told that mum's tumor was cancer and inoperable due to the mets on the lungs, even though these were not tested it was decided that they could be nothing else except spread from the pancreas. A week after that we saw an oncologist who said she could start Gembiticine within a few days but after researching this i felt it didn't offer as much hope as other treatments so requested that we were referred to XX to discuss clinical trials and other options. A week after this request we went to XX and met with the clinical trials team who advised that there was a trial running that did not treat the cancer, it was an antibody that may prevent muscle wasting, but that it would be run alongside chemo and that unlike in our area we could opt for Folfirinox which is exactly what i'd been hoping for. She was also put on Creons to help with digestion. To cut a long story short within 2 weeks of that meeting we had had all tests and scans done needed to see if mum was eligible for the trial (which she was!) and treatment commenced the 18th Dec.

The first day of the chemo infusion and trial drug went smoothly and we returned home, apart from a slight cold feeling on head and when drinking cold water there was nothing much to report. Mum didn't sleep great due to the steroids i imagine and said she had an ache in her mid back which she took as the chemo 'getting the little b*****d!'. Although i'm glad she felt this way about it it worried me as she hadn't had any ache in that area previously. The next day all was well but she got the same back ache the day after and that has continued intermittently although never being bad enough for her to take more than paracetemol or the odd codiene. Extreme tiredness, foggy head and nausea started on the 4th day getting worse through the 5th and 6th and then started to improve. She was taking steroids for the first 3 days and domperidome for 5. Then the Zarzio injections started which we think gave her belly aches, lower back aches and sternum pain. Also any straining movement made these places ache at different times throughout the 7 day course. Heartburn, belching and indigestion then also started to be problematic and so we started on Omeprazole once a day. The few days before the next round of Folfirinox were fine except for some tiredness and the mid back ache. She didn't suffer any diarrhea and only one occasion of constipation. Appetite at times wasn't fantastic but always managed to eat something and didn't lose much weight.

Bloods were taken before the next round and all was fine so 2nd treatment went ahead. This time we were also given Emend & Ondasetron for the nausea which worked wonders, barely any nausea at all. Foggy chemo head greatly improved also. Mum had a slight reaction to the Oxaliplatin during infusion in the shape of cold numb hands, eyelid twitching and feeling like she couldn't talk/form her words properly. This wore off after a little while with the aid of a heat pad. Once home she had much more sensitivity to cold and needed to wear her gloves and drink room temp drinks. Although the nausea has been better this time round there have been other problems. Extreme tiredness had prevailed, worse this time, lasting throughout the 2 weeks on and off. The zarzio gave her similar side effects as before but less so. Sore mouth and horrible taste controlled with salt water rinses. Some hair thinning. Mid back ache seeming to be less frequent, didn't feel it at all hardly for a couple of days. Some bloody mucus when blowing nose, to do with cells and platelets i believe. We're now 2 days before the 3rd round and for the last few days she has had very frequent bowel movements, some loose but mostly fairly normal just much more often. Piles (like she needed any more problems!), and excessive wind. I called the hospital this eve as the terrible wind, lower belly ache, and bloating along with a recurrence of pale stools today got me worried about her stent, not sure if anyone else has had blockage problems but the hospital didn't seem to concerned as they are doing her bloods tomorrow so i'm assuming any probs will show up then? Other thought i had was maybe needing more creons, she currently takes 1-2 with a snack and 2-3 with a meal (25000). Mid back ache also made a comeback today for a bit :(

Although it probably doesn't sound like it there have been quite a few days when Mum is up and about and feeling pretty much fine, yesterday we were out for my birthday meal and there were no issues at all. Before chemo started and once blood sugars were under control she barely even felt unwell except for some digestion problems. She has handled all of this with such a strong, positive attitude and i'm in awe of her. We even taught her how to 'twerk' on Xmas day!!! I just wanted to get every symptom and side effect written down whilst it's fresh in my mind and to see if anyone else had experienced anything similar? I find it so hard not to panic about every single little thing!! I just want to do everything in my power to make sure she has every possible option available to her, i am in no way ready to lose my Mum yet and she certainly doesn't intend on going anywhere!

Apologies for the massive post everyone, just needed to get that off my chest before we start again on Wednesday!

Thanks for taking the time to read and any advice welcomed.

Kerri
Last edited by Kerri9499 on Thu Jan 30, 2014 8:21 pm, edited 1 time in total.

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Newby - Folfirinox and Clinical Trial

Postby MSH » Tue Jan 14, 2014 10:25 am

Hello Kerri, I am sorry to read of your mother's misfortune. It is hard coming to terms with something that seems to come out of nowhere.

Reading your post brought back memories of my time on Folfirinox, and but for them drugs I'm sure I wouldn't be here today. I don't really understand why any oncologist would suggest Gemcitabine alone over Folfirinox the trial data is quite compelling, though NICE doesn't help. I suspect the back pain is from the tumour. Mine came at a similar time and cleared after one or two chemo sessions. People react to the chemo in different ways, for instance I didn't take any anti-emetic and still struggle to keep my weight down. On the other hand I recognise many of the symptoms you describe. The difficulty with speech or dysarthria came when I was on Irinotecan and was one of the few things which got better rather than worse. The taste and sore mouth and even the tinge of blood when blowing my nose which I think is more a mild mucositis.

I lost practically all my hair and not just on the scalp though it is now back as thick as ever (3 months post chemo) and much darker than before. The only lasting effect now is the neuropathy which isn't really a problem and may be improving.

I hope your Mum is able to complete her course, it should do her a lot of good.

Kerri9499
Posts: 11
Joined: Mon Dec 23, 2013 11:40 am

Re: Newby - Folfirinox and Clinical Trial

Postby Kerri9499 » Mon Jan 20, 2014 5:33 pm

I've been following your posts with great interest over the last couple of months as like you say, a lot of your side effects and symptoms seemed quite similar, it's really given me hope to see you doing so well. Have you now had the nanoknife procedure? If so I truly hope it has been a success and that you're feeling well. I have been looking into it myself but due to the small spots on my Mum's lungs I was under the impression that this option isn't feasible for us? We have a scan coming up on the 5th Feb so will be looking into sending the results over regardless to get a definitive answer. It's a constant search for plan b's and new treatments, I don't ever want to let Mum down by not exhausting every possible avenue. I have found in our experience that it's down to the patient or carer to research and push for alternatives and this forum has been a fantastic source of information!

Mum's bloods were fine last week so the 3rd Folfirinox treatment went ahead on Wednesday, apart from the neuropathy and a bit of occasional slight backache for a couple of days after she has felt remarkably well and able to go about her day. Tiredness hit yesterday as usual so most of the day was spent in bed but whereas this continued for a couple of days previously, this time is markedly better and she has been up and about today and feeling ok. So far so good!

Thank you for taking the time to reply, it really is appreciated.

Kerri

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Newby - Folfirinox and Clinical Trial

Postby J_T » Mon Jan 20, 2014 6:38 pm

"It's a constant search for plan b's and new treatments, I don't ever want to let Mum down by not exhausting every possible avenue. I have found in our experience that it's down to the patient or carer to research and push for alternatives and this forum has been a fantastic source of information! "

Too true Kerri. I wish your mum the best and good luck with your efforts to get Nanoknife.

Best wishes
Julia x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Newby - Folfirinox and Clinical Trial

Postby Cathy » Mon Jan 20, 2014 8:40 pm

Hi Kerri

So sorry to hear of your Mum's diagnosis and I do empathise with your worry about every symptom and side effect. I was the same.

I dont think any two patients are the same but the side effects you describe are pretty classic folfironox. What I recommend (as I did this) was keeping a diary. Useful for you and also useful for the oncologists. We adapted my partners meds over time to suit how he reacted to folfironox. With regards to tingling.. This did get worse for us over time, of all the side effects this was the one that Jonathan complained of most. Most other side effects (sore mouth for example) were helped by other meds.

Best of luck Kerri. You are embarking on a steep learning curve but you will get loads of great advice from this forum

Cathy xxx

Kerri9499
Posts: 11
Joined: Mon Dec 23, 2013 11:40 am

Re: Newby - Folfirinox and Clinical Trial

Postby Kerri9499 » Mon Jan 20, 2014 10:06 pm

Thank you Julia and Cathy. I was very saddened to read about the passing of Ray and Jonathan and think you are both amazing for continuing to support others on the forum. I think the one thing we have found is how kind people can be, our community cancer nurse will come to flush Mum's picc line on her day off or after working hours and our clinical trials nurse is always at the end of the phone. The sister who administers Mum's chemo always gives her a big hug when it's finished and it's these little things that really make the world of difference to her. For me it's also people like yourselves who can still lend an ear to others even though you are going through an incredibly difficult time. I really do admire you both.

The diary is a definite must and very good advice. Since the 2nd round of chemo i have been keeping one, we remember the general side effects but when and what day always eludes us when the Dr starts asking questions so now i write every little thing down, even the embarrassing bits much to Mum's dismay! It also helps to see the pattern in how she is feeling on certain days, the 4th and 5th seem to be when it really hits. Only one more treatment to go now before scan day, trying not to think too far ahead though in that respect, as my friend said to me this week, 'don't count the days, make the days count'. It's become my new mantra and i'm sticking to it :)

Kerri x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Newby - Folfirinox and Clinical Trial

Postby Cathy » Mon Jan 20, 2014 10:38 pm

Hi

It sounds like you are doing all the right things Kerri.

You are also right about day 4 or 5. That was our experience too. Jeni on this site suggested we tried reducing the steroids more slowly so the dip wasn't so great. This did help but also we discovered raised Jonathan's blood sugar more so needed insulin so he stopped. Might be worth thinking about for your Mum though.

Cathy
Xxxx

Kerri9499
Posts: 11
Joined: Mon Dec 23, 2013 11:40 am

Re: Newby - Folfirinox and Clinical Trial

Postby Kerri9499 » Tue Jan 21, 2014 5:40 pm

Thanks Cathy, I will ask about the steroids when we next go for treatment. Mum's tumour has already caused diabetes, in fact if it wasn't for the symptoms from that I'm not sure she would have been known about her PC so quickly. I certainly have nothing but good things to say about how quickly and efficiently our local hospital dealt with getting the diagnosis.

When she is on the steroids her BSL rises quite dramatically so we combat that with higher insulin on the 3 days she takes them, we could maybe continue that for an extra day or so if it meant she didn't have quite as big a dip. How many days did they reduce the steroids over for Jonathan when he tried it if you don't mind me asking?

K x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Newby - Folfirinox and Clinical Trial

Postby Cathy » Tue Jan 21, 2014 6:06 pm

Hi Kerri

It was only after going onto steroids and increasing them that we found Jonathan had diabetes as he had the classic symptoms of it (drinking loads). He started on insulin but, once treatment ended and steroids ended his blood sugar reduced to the point where he just needed meteor in pills.

Initially he took steroids for 3 days (to the Sunday when his dip normally started after treatment on a Weds). When he extended them he took them to the Tues (I think) then at half the amount to Thurs. They did help but he then also lost a lot of muscle in his arms and legs so the oncologist thought he might be sensitive to them. So.. A mixture but doing that did help with the dip.

Cathy xx