Folfirinox Round 7

[toodotty]

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]

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 xx 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]

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]

Well, arrived early for my appointment with my husband, like a pair of eager beavers only to meet with more disappointment . 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.

toodotty

[Dandygal76]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Michaela1]

I hope so. I have a scan booked for 31st of Oct, then round 6 on 2nd Nov. They said the results will take a couple of weeks, but they are going to try and get them before that. I think they feel guilty about giving me a wrong blood report saying my ca19 was down to 27, when in fact it was 5030! This was such a blow after getting what we thought was amazing news....however today we found it it has now gone down to early 4000, so a litle comfort there. Let's hope the scan is good. I didn't know know you get a chemo rest?what is milkthistle? How are you feeling now? Have you written to your mp yet?

[toodotty]

Hi Michaela1,

A chemo rest is basically a break from chemotherapy, which I took at the end of July so that I could fit in Nanoknife treatment. I ended up having the whole of August and September out of chemo, though I did have several hospitalisations due to the problems with my stent. As I was feeling really well at the time, infections aside, I was comfortable with some normal time and we even got away for a couple of days. As Folfirinox is very toxic and the affect is cumulative, I also felt that giving my body time to recover from the side effects and to detox should help. The jury is out as to whether this is a good idea or not but as my cancer is stable it seemed a good idea.

Milk thistle is a supplement you can buy from any health store and has been used for centuaries to support liver function. My liver function tests are generally pretty good and my chemo side effects minimal. Maybe I am just lucky but who knows.

I'm in for Round 9 tomorrow, feeling fine, I have been on the exercise bike a bit this week, sooooo boring and will be doing the garden later. And yes, I did write to my MP/Health Secretary and the response was that they cannot support any treatment that is not approved by NICE. Catch 22, but I am hopefully if this stage of treatment goes well then I can have Nanoknife to the pancreas around Christmas time. The last scan showed that the tumours on the liver are "typically ablated scar tissue", which = no tumours.

Best wishes,

toodotty

[Michaela1]

Wow great that means no tumours!I hope they let you try the nanoknife, I know if mine went away I'd be pushing for the same thing, but I'd have trouble raising the money going private!

I will look out for the milk thistle, but if tastes horrid I won't be able to drink it!

Wish I could do a bit on exercise bike, but just trying to build my strength back up from losing 3 stone and being in hospital. I have 0 energy, and use a mobility scooter if I have a big city visit or something like that.

Let us know how round 9 goes won't you?

I'm surprised I can actually type as my fingers are so bad with pins and needles and the cold! I wear gloves around the house! Haha.

Michaela x

[toodotty]

Michael1,

Milkthistle comes in tablet format which is what I use. Round 9 went find today, but like Kate2101 I seem to be suffering more nausea this time round, but not as bad as morning sickness so not letting it trouble me too much.

Re no energy, are you using Ensure?, this works for me if I am feeling jaded. When I was really weak at the beginning I did step ups onto the bottom step of my stairs. I could only manage about 5 at a time, so I just did this multiple times during the day. Over a week I increased the intensity and started to regain muscle strength in my legs which were totally wasted.

You have had a really tough time what with being in hospital for 3 weeks so you need to listen to your own body to do what you can when you can. But it is really important to try to regain some strength in your body.

Re funding, I am able to finance mine because my life insurance had a clause which paid out for a terminal illness (life expectancy of 1 year or less). If you have insurance do check the small print. Other people I know have used crowd funding.

toodotty

[Michaela1]

Wow, the no typical abated scar tissue sounds good! I hope mine come up similar when I have my scan on the 31st! I would love to try extra treatments, but I think the nanoknife you try is private yes? I would not be able to afford private treatment, and don't think there are any clinical trails out there for our stage of cancer!

I don't think I will take the time off as I want it over and done with asap and get the picc line out and start trying to live a normal ish type of life without it for a while, until it rears its ugly head again if you get me?

I look for other clinical trails but there doesn't seem any out there for us at the moment, they seem to be concentrating on how the can recognise the cancer earlier, which is a good idea.

Anyway feel I am waffling now...its steroid days so awake at silly o clock!

Michaela x

[toodotty]

Ha ha,

Yes I am on Steroid Day as well so had a restless night, re-listened to one of my audio-books. I did miss some chapters so must have dropped off at some point.

You are right that Nanoknife is only available privately in the UK and only if you can get your MDT team to approve the treatment, otherwise it is not insured and the consultant cannot do the procedure. Which is why I haven't yet been able to have the treatment to the pancreas. Cost is about £10-12K depending on length of procedure, but there are very few experts in this country because of the negative attitude of the NHS & NICE. There is currently a trial for Stage III PC patients I think this is running out of the XX hospital in XX , but so far I believe that they have only managed to recruit 3 eligible patients. There is virtually nothing available for Stage IV patients in the way of clinical trials, and they are so restricted the ones that are available that they pretty well exclude everyone from the trial. Current approaches are not going to improve the outcomes of the majority of PC sufferers. Sorry, I will get off my high horse again!

If you are not following Nanoknife warriors website then it is worth a look. There is definite evidence coming out of the US that Nanoknife, properly used, could be as effective as Whipple even for Stage 4 patients.

Agree with comment about PICC line, it is a pain and nuisance as always trying to work out when to get the dressing changed especially if planning a few days away. Also missing my swimming but this may not be possible with tingly fingers/toes.

toodotty

[toodotty]

Round 11 of Folfirinox went well last Friday despite the stinky cold that I have had for two weeks. Immune system was fine and they were OK for me to go ahead which surprised me as I had been feeling pretty grim for about 10 days. Nearly at Round 12 and my fingers and toes are still working, so Dr Doom got it wrong again thank goodness.

Decided to take a Kate2101 approach to visualising the tumour being reduced to cinders, and spent a nice bit of time imaging myself with a large flame thrower burning the tumour to nothing. I think I got a bit carried away with it as it really started my heart racing and at one point I broke out into a sweat! Still tumours do not like heat or oxygen so maybe this is a good thing. Thankfully the nurses didn't come around to do my observations until I had calmed down a bit.

Hope you are all keeping well,

toodotty

[KeithKerry]

I'm glad it's going well for you. I remember years ago reading about a man that visualised that he had a pacman running round in his body gobbling up the cancer cells. He was eventually clear of cancer. That has stuck with me since I read it as a young teenager.

I really hope your next scan results are positive. We have to wait until January. It's oddly peaceful but at the same time frightening that there is no treatment being given and no complex monitoring going on with my Daughter. Having said that, life has returned to a semblance of normality for us all which is universally welcome in our family.

I hate all forms of cancer. I am continually frustrated by the thought that as a species we can send automated rovers to other planets in our solar system that we can control from our planet. We can analyse soil and send back pictures of the landscape. We can sample the atmosphere and scan for signs of life past and present. We can make a probe and land it on a distant comet and get it to send back data and pictures. Almost 50 years ago we were walking on the moon.

Yet we cannot conquer a disease that is centuries old, rife in our species throughout the world, and results in so many deaths worldwide every year.

I guess curing cancer is not as exciting as conquering space.

[Dandygal76]

Toodotty - I have just read your post on the medical insurance front. I am afraid I cannot help with that because I think you will have difficulty as you are going for a medical procedure and with dad we was just going to risk no insurance for a holiday. However, I am wondering - why are you not looking at nanoknife in London privately as many have before? I thought there was someone in Germany as well that would treat stage IV. I am not sure the treatment will be much different unless you are going for open surgery nano. x

[toodotty]

Hi KeithKerry,

It is difficult not to worry about the big C even if it seems to have disappeared, it will always be there in the background. Your daughter just needs to listen to her body, any sign of change of digestion, even something as simple as "oh that seems to have given me indigestion, stomach cramps etc.", then it is time to get it investigated. I think my biggest fear is falling off the conveyor belt, given the difficulty of getting onto it in the first place. Make sure there is a quick route back to the Oncologist in the event of any worry. As time moves on, then there is less chance of the cancer returning and you never know your daughter may become a "complete responder" where the cancer disappears without a trace. I met a lady who has had PC 7 years ago and this has happened to her, she didn't look like superwoman but clearly she is!

Erika

[toodotty]

DandyGirl76,

I have done much research into Closed and Open Nanoknife procedures in the months since my procedure was stopped due to NHS interference. It is clear that there is more risk and less chance of a successful outcome using the closed procedure versus open procedure. This does need to take into account the fitness of the person etc. and each case would be different. The problem with treating the pancreas via the closed procedure is that it is surrounded by so many different organs that there is great danger of damage to other organs and also a reduced chance of being to treat all of the cancer. When my husband was diagnosed with a failing heart value he was offered keyhole surgery or open surgery. We opted for the later because the surgeon had more experience and he quite rightly said that keyhole surgery is "like trying to paper your lounge through your letterbox". This stuck with me.

So I have decided to go abroad to get open surgery, at even greater expense, this will reduce the chance of damage to other organs, a better chance of treating the whole tumour but also the surgeon will be able to detect even small tumours that may not show up on a CT scan and treat these as well. Overall I believe this is a better option for me, I want to kill my PC tumour to stop it sending out cancer seeds to the rest of the body. I believe this is the best chance of extending my life for a long as possible. Also, going abroad, I cannot be denied the treatment by the NHS, it is outside of their control. The cancelled op left me totally devastated in the summer, I don't want to face this possibility again.

I am getting the treatment done by a surgeon who has done over 1,000 of these ops and does about 250 a year, so he has some mileage and excellent feedback from many people.

Erika

[Dandygal76]

Thank you for taking the time out Erika to reply to me. If the surgeon has done so many ops then does he have any statistics on stage 4 pc or any published research? I have limited research of open surgery nano other than through NK Warriors (who are a fab group) and so cannot comment more other than with the UK NK Surgery (not open) the data has been somewhat lacking. With regard to my dad's treatment and what led us to the decision I am currently in the process of challenging. I know I am being a bit careful with what I say because PCUK nurses will nicely take down anything they think would be detrimental to me or cause a challenge to them. I hope you have found a great route that is yet to be proven but please do take comprehensive notes and keep all e-mails to make sure you can challenge if not given all the facts in your choices. It is a lot of money (and as I said I have no idea re open KN to be negative) but, as a precaution I would dot your i's and cross your 't's unless your family are super rich! Just be aware that some doctors are not as ethical as others. I am intending on posting my journey of challenge on my dad's old thread for others but will run it via PCUK because it is a bit delicate but it needs to be done. They may disagree. I do wish you all the best and I hope you are living proof that the NHS needs to change. xxx