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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toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Folfirinox Round 7

Postby toodotty » Sun Sep 09, 2018 3:06 pm

Hi my fellow Folfirinox travellers,
I started round 7 on Friday having been kindly informed by Dr Doom that the side effects would be much worse this time and that I will probably lose the use of my fingers and toes. Thanks for that cheery news mister .... I am taking a much more upbeat approach; firstly I am not jaundiced this time around and I am feeling fitter than I have all year so should hopefully stand up better to this. Also as he has shown no particular interest in my side effects I am taking this as another standard statistic. He doesn't know that I am taking milk thistle to help with the side effects, and I have to say that my tingly fingers and toes are minimal this time around. What did come as a bit of a shock was that I felt quite zapped on the day, but again I have concluded this is because I have been feeling so well. If you are not well, then feeling a bit more unwell is less noticeable. Again it was short lived and mostly a feeling of an upset stomach and some nausea. This cleared by the next day so feeling fine.
I am sticking to my simple diet this week, vegan, small meals and some Ensure to boost me a bit so hopefully this will stop the bloating, constipation and then the dreaded laxatives which also mess me up. Also keeping a close eye on my muscle wastage in the legs. It has taken some time to build these up again so I don't want it to all go to pot.

Onwards and upwards,
toodotty

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Wed Sep 19, 2018 11:50 am

It is never good to feel smug. Just when I was thinking it was all going along nicely, I end up back in A&E with biliary sepsis (infection) and problems with the dreaded plastic stent again. Soooo many blood tests, more antibiotics and virtually the last rites from the A&E Registrar, "Yes I do expect to be resuscitated in the unlikely event of my heart stopping ...... ". Do they ask this of everyone who presents in A&E with an infection? I can joke it off but it hits my husband really hard.

The good news however is that I finally have had a nickel free biliary stent fitted in Hammersmith on Monday. It went like a dream, so hopefully I can put the worry of the plastic stents behind me now.

Further good news, I went to see Dr Doom today, who has had charm lessons since I last saw him. He even said how well I was looking! That is a first. As I am looking so well, he has decided to postpone my next round of chemo which will also give my body time to recuperate, (though all the blood results are looking good). He also he wants a CT scan to review where we are especially given all the poor liver has been through in the last two months which I think is a good idea. I have been struggling with the idea of more chemo when I am feeling so well, (biliary stent issues aside), I have a great appetite and have been gaining weight.

So a two week reprieve for me, yippee!

toodotty

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Tue Oct 02, 2018 7:19 pm

Feeling down today, the biliary stent is causing me problems. I have been in pain for the last two weeks, especially at night. I cannot lie on my sides without a stabbing sensation, if I lie on my back after about 3 hours the same happens and I have to spend the rest of the night trying to sleep in an upright position. Feeling exhausted as I haven't slept properly for over a week, also been experiencing some upset stomachs during the night just for good measure.
Had a CT scan last week, and have a review with my Oncologist tomorrow. Let's hope he looks at the scan this time as he didn't bother with the last 2, so I haven't yet had my "progress review" which should have happened in August.
I asked for a copy of the CT scan and was told today it would be available in 30 days time. "This is the hospital policy to comply with the new GDPR regulations", I was told. They picked on the wrong person, I spent 9 months working on GDPR and this is a load of nonsense. The regulations are that they have to respond within 30 days, not on 30 days and I told the manager in no uncertain terms that this was not acceptable. It has been agreed that I can have the disk once I have seen the Oncologist, which is tomorrow.
I am exhausted with the constant fighting,

toodotty

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Wed Oct 03, 2018 2:27 pm

Well, arrived early for my appointment with my husband, like a pair of eager beavers only to meet with more disappointment :cry: :cry: . They did not have the scan report from the radiologist so they could not comment on further treatment. My Oncologist didn't have the guts to tell me himself but sent some junior doctor to break the news. I finished Round 6 at the end of July, I had round 7 at the beginning of Sept., and have been in limbo since. I am also having problems with my biliary stent which I had hoped to review today to see if there is any obvious reason as to why this is giving me so much pain. I was told to book another appointment for 2 weeks time, as which point I got quite angry and said that I cannot wait another two weeks for my mid-treatment review which should have happened in August. PC will not wait, I need to know if this cancer is getting any better, worse etc.
I lied to the booking clerk and said that my Oncologist insists that I need to be seen next week and she has put me before the first appointment. I will now spend between now and then chasing to get the CT scan report done in time. Meanwhile I will have to hope that my pain the side doesn't get any worse and that I don't end up back in A&E again. I checked my blood results and I neutrophils have plummeted and I look close to neutrophenic, though the DR didn't pick this up today.
I feel like an absolute nobody and I am wondering if I need to move abroad to get treatment as it doesn't seem to be happening for me here. :cry:

toodotty

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Folfirinox Round 7

Postby Dandygal76 » Wed Oct 03, 2018 11:53 pm

Toodotty - was it you I said to get my e-mail address and I would help? I ended up unexpectedly away from work. Please ask PCUK for my e-mail and contact me. GDPR is a nonsense anyway to start with in these circumstances. They have a duty of care to not be negligent and to allow you to make informed decisions as to how you will proceed - this is not a GDPR issue and most hospitals will not treat it that way under the circumstances. What a load of crap. Formally write your concerns to the oncologist. Copy in the cancer clinic manager, PALs and the Chief Exec of the hospital, plus local MP and Councillor. Don't be rude.. just ask that your worries are answered. They are all very busy and overstretched (it is not personal) but if you take a calm measured approach to them all I would be surprised if you have a lack of response. If you have the energy I would also rock up at your MP's surgery so he gets to know who you actually are. Trust me.. my dad may not have survived but I believe I was as fully informed as possible as to his NHS treatment and diagnosis etc than anyone I have known through this (and I was not rude). You will get further writing your issues and formalising them (whilst still pursuing the normal course of things... like fibbing ha ha). I am not kidding though.. how dare you be that desperate.

To be honest - you are better off admitted to hospital... they do tend to move on things then (not that it should be the case) and you will probably get the results quicker.

I hope my advice helps.

L

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Thu Oct 04, 2018 10:56 am

Hi DandyGal,
Thank you for your advice, believe me I have never written so many letters of complaint. What a terrible waste of my limited time but it is the only way to get things done.
I did write to PALS as soon as I got back from my appointment and lo if I wasn't contacted by one of the Drs late in the afternoon to say that they had my results back from the scanner people (these are not managed by the hospital but are in independent unit). I results were good, all the tumours had decreased in size (I don't know by how much) and that some of them on the peritoneum had disappeared all together. This should have been a moment of jubilation but I was so upset from earlier in the day that I just couldn't stop crying. I could have had these results two months ago, how much hope and determination to keep going could this have given me and my family.
Still I am now booked in for chemo tomorrow, Round 8 of Folfirinox, this knowledge has given me courage to grit my teeth and get on with it now.
I have decided to write to the Health Secretary Matt Hancock who is quoted in Tuesday's Telegraph of saying "The NHS does an amazing job on the treatment of cancer", "We are best in class at cure once diagnosed ....", who is he kidding? This may be the case for breast cancer but not for PC or many of the other cancers. And don't worry I won't be rude but it is all very well trying to get earlier diagnosis of cancer but if the money is not put into providing treatment then the effect may be even worse for cancer sufferers as the system becomes overwhelmed.
So today I am forcing myself to smile as I embark on the next stage of my journey. It is six months since my diagnosis and I am still here, feeling pretty good most of the time (stent pains aside) and hoping to be around for my son's 21st birthday at the end of the year.

toodotty

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Thu Oct 04, 2018 10:57 am

Hi DandyGal,
Thank you for your advice, believe me I have never written so many letters of complaint. What a terrible waste of my limited time but it is the only way to get things done.
I did write to PALS as soon as I got back from my appointment and lo if I wasn't contacted by one of the Drs late in the afternoon to say that they had my results back from the scanner people (these are not managed by the hospital but are in independent unit). I results were good, all the tumours had decreased in size (I don't know by how much) and that some of them on the peritoneum had disappeared all together. This should have been a moment of jubilation but I was so upset from earlier in the day that I just couldn't stop crying. I could have had these results two months ago, how much hope and determination to keep going could this have given me and my family.
Still I am now booked in for chemo tomorrow, Round 8 of Folfirinox, this knowledge has given me courage to grit my teeth and get on with it now.
I have decided to write to the Health Secretary Matt Hancock who is quoted in Tuesday's Telegraph of saying "The NHS does an amazing job on the treatment of cancer", "We are best in class at cure once diagnosed ....", who is he kidding? This may be the case for breast cancer but not for PC or many of the other cancers. And don't worry I won't be rude but it is all very well trying to get earlier diagnosis of cancer but if the money is not put into providing treatment then the effect may be even worse for cancer sufferers as the system becomes overwhelmed.
So today I am forcing myself to smile as I embark on the next stage of my journey. It is six months since my diagnosis and I am still here, feeling pretty good most of the time (stent pains aside) and hoping to be around for my son's 21st birthday at the end of the year.

toodotty

Michaela1
Posts: 40
Joined: Sat Jun 30, 2018 11:16 pm

Re: Folfirinox Round 7

Postby Michaela1 » Fri Oct 05, 2018 5:34 am

Good luck with round 8 Toodotty! It is great that we can all be of different help for each other in different ways.
I know I don't offer much legal help with letters of concern/complaint. But believe me when I say that I think of my new chemo friends a lot.
Michaela

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Sat Oct 06, 2018 11:49 pm

Round 8 yesterday went well. Even irinotecan dose which is like IV-flu was not so bad and apart from the hot/cold flushes I felt reasonably well. Felt sick overnight but this has settled down today, just light vegan meals and stomach feels fine. I had eradicated the pain in my side from my stent issues by using arnica, wish I had thought about this before, I knew that there was some inflammation but the blood tests didn't show this.
Only 4 more rounds to go then I may stand a chance of Nanoknife to the pancreas.

toodotty

Michaela1
Posts: 40
Joined: Sat Jun 30, 2018 11:16 pm

Re: Folfirinox Round 7

Postby Michaela1 » Sun Oct 07, 2018 8:44 am

Keep strong Toodotty! You are doing an amazing job with all the battles you continually have to fight! But you do so with little complaint. You are my little inspiration board!
I am doing relatively ok on round 4, but from keeping a diary I know I usually have my bad days between days 6-8 OF my cycle. Fingers crossed I have a clear run his time considering I've just had 3 weeks in hospital. Keep us updated td.x

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Wed Oct 10, 2018 10:26 pm

Hi Michaela1,
Thanks for your kind comments, we all have to keep fighting in our own way. Days 4/5 of cycle tend to be my down time, partly because I am seriously hyper on the steroids during chemo. Sort of forgot about that the last two days in the lovely weather, have spent two days gardening and I am totally pooped now! Also got my hair cut, my darling son asked which one, ha ha! Trying to work with the Jamie Lee Curtis look after watching Graham Norton last Friday.

Keep going girl!

toodotty

Michaela1
Posts: 40
Joined: Sat Jun 30, 2018 11:16 pm

Re: Folfirinox Round 7

Postby Michaela1 » Mon Oct 15, 2018 3:16 pm

I wouldn't be able to do the gardening as dexterity and tingling won't allow it.....have trouble pegging out the washing!😂😂 I have cycle 5 on Wednesday...i always dread it now, seems like a vicious endless circle! As for hair, mine is so thin now it only just looks 'normal' .if you are taller than me you can see how thin it is on top! Luckily I'm 5'7" so can get away with most people, haha.
You keep going too! X

toodotty
Posts: 103
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Wed Oct 17, 2018 2:48 pm

Hi Michaela1,
I am taking Milkthistle to help with the side effects from Chemo and also to support the liver and it seems to be making a difference. I do get tingling but not as bad. Onto round 9 on Friday, I hope today went well. Only one more round for you before your review scan and maybe a short chemo holiday?
toodotty