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Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Folfirinox Round 7

Postby Michaela1 » Thu Oct 18, 2018 7:32 pm

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
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Fri Oct 19, 2018 10:20 pm

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
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Folfirinox Round 7

Postby Michaela1 » Sat Oct 20, 2018 5:02 am

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
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Sat Oct 20, 2018 10:07 am

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 Christie hospital in Manchester, 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
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Sun Nov 18, 2018 6:03 pm

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
Posts: 35
Joined: Fri Apr 13, 2018 8:44 pm

Re: Folfirinox Round 7

Postby KeithKerry » Sun Nov 18, 2018 10:00 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Folfirinox Round 7

Postby Dandygal76 » Tue Nov 20, 2018 10:48 am

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
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Tue Nov 20, 2018 11:17 am

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
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Tue Nov 20, 2018 11:29 am

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Folfirinox Round 7

Postby Dandygal76 » Tue Nov 20, 2018 10:41 pm

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

KeithKerry
Posts: 35
Joined: Fri Apr 13, 2018 8:44 pm

Re: Folfirinox Round 7

Postby KeithKerry » Thu Nov 22, 2018 5:43 pm

toodotty wrote:
> 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

Thanks for the advice Erika, I have passed it on and stored it myself as well. I hope the "complete responder" tag applies to you as well. There are several similarities between yourself and my Daughter in terms of how you are responding to the treatment in particular. I am following your battle very closely, I'm sure I speak for others when I say that you are an inspiration to other PC sufferers. I hope the Nanoknife treatment becomes a successful reality. We want to pursue that avenue as well if we can, as well as others that you have mentioned. All we need is to be able to get to speak to someone!

It's wonderful to have reached this point where there is no active cancer left to treat and to have a treatment break of 3 months at least. But with that has come the situation where we have not been able to discuss the results of the most recent scan 1-1, or what might come next after that. We've only been able to talk about any of those things with a very dedicated and passionate specialist nurse who is incredibly over worked and over stretched. She is only able to tell us so much and despite her reassurances that all is well from the last scan and recent blood test results, it's not the same as sitting with an oncologist who can field our questions directly.

We have no future appointments booked and nothing more concrete than a promise of a scan "in the New Year". I am working on that in terms of making a nuisance of myself until we get something more tangible, but it's tough going when we're already dealing with a traumatic event that has changed our lives forever. I can only imagine what it is like for you as your experience with the NHS has been less than ideal since day 1.

Keep plugging away and know that other people are wishing you well in your own battle.

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Thu Nov 22, 2018 10:44 pm

Hi Keithkerry,
That is worrying indeed that there is nothing concrete planned for the New Year. Write to the Oncologist first to express your concerns, if this doesn't work then complain, you should be able to write to the CEO of the NHS trust that you are under, or PALS, Get reassurance that your daughter's treatment is being properly monitored. What a shame nobody wants to find out why she has had such a great response, how are we ever going to learn and improve things? I am booked for Nanoknife in Florida next month, I have a meeting with Oncologist before then but not expecting any support.
Meanwhile I will keep campaigning for better treatment primarily for PC but also for all cancer sufferers.
Erika

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Fri Dec 07, 2018 9:22 pm

Well Round 12 over and done. Had a CT scan on Wednesday and unfortunately they found some very small blood clots on the lungs, "nothing to worry about" but I am now on blood thinners which I am having to self inject daily, for the next 6 months ….. I didn't get to see my Oncologist at the last meeting, even though I had asked for this, but we have a meeting now in January after I have my Nanoknife treatment and a chemo holiday over Christmas. There is provisional agreement that I can continue with Folfirinox in January which is also hopeful.

Erika

Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Re: Folfirinox Round 7

Postby Theresa Upton » Mon Dec 10, 2018 8:33 pm

Hi Erika

I just want to wish you all the very best with the Nanoknife treatment. Safe journey.


Theresa

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Folfirinox Round 7

Postby Dandygal76 » Mon Dec 10, 2018 8:46 pm

Erika, good luck lovely warrior. I hope these holidays not only bring you hope around the nano but also peace and happiness with your family in these times that seem so precious. My thoughts will be with you and routing you through to those 5 years that more and more seem to make. You are a strong lady.. you will do it. x