Jump to content

Thank you and our story... but we are not that far yet!


Dandygal76
 Share

Recommended Posts

  • Replies 433
  • Created
  • Last Reply

Top Posters In This Topic

  • WifeampMum

    40

  • Proud Wife

    79

  • Dandygal76

    138

Top Posters In This Topic

Does anyone out there have ball park prices for Folfirinox? I am in a catch 22 where I cannot get a price without a consultant letter of exactly what is required specific to dad but we do not need a consultant letter because we are not there yet, I am just planning next steps. I would really appreciate any help as I need to ease dad into these things and let him get used to the idea. x

Link to comment
Share on other sites

I am just going to do a house viewing but when I am home later tonight I can try and log onto my Bupa account and see the cost of hubby's treatment if that helps - it list all that was paid out.


I can tell you that the neulasta injection and take home meds after chemo costs £997.50. I know that because the very first time hubby had chemo and we were given his take home meds, that was the price on the pharmacy bag. Well I nearly had a heart attack thinking we were expected to pay for that but it was a mistake, it was the amount to be charged to BUPA!


If you need urgent info, use messenger whilst I'm out xxx

Link to comment
Share on other sites

Thanks PW, I would really appreciate that. It is not urgent, I just need him to start thinking about it. He stashes his money in these fixed accounts and before I know it we will all be waiting until something matures rather than doing the best medical thing for him. x

Link to comment
Share on other sites

Hi DG,


Yes, without doubt the waiting is one of the agonies of this and other cancers. I am thinking of you and hope that diversion strategies are working :) M xx

Link to comment
Share on other sites

Sounds ridiculous but I have always found that if you worry about something, it doesn't happen but if you don't worry it does. I will be keeping everything crossed for you, as always xx

Link to comment
Share on other sites

If I don't get a chance to come on tomorrow, just to say will be thinking of you on Wednesday with fingers, toes and goodness knows what else for what I hope will turn out to be a successful cheery news scan. How long do you have to wait for the results? xxx

Link to comment
Share on other sites

DG, I will also be crossing everything for a great scan tomorrow.


How I wish there was a cure for scanxiety. I think a lot of us follow the PW method of thinking the worst so it doesn't happen. But then we spend a lot of time worrying needlessly. It reminds me of this Mark Twain quote: "I've had a lot of worries in my life, most of which never happened".


xx

Link to comment
Share on other sites

Hi DG


I know you're interested in options so when I came across this video I thought of you.



OncLive Insights

Pancreatic Cancer Therapeutic Sequencing


It sets out the case for giving second line Onivyde/5FU after first line Gem/Abraxane. The speaker says that one of the pros of Onivyde/5FU over 2nd line Folfirinox is it cuts out the Oxaliplatin which is a frequent cause of neuropathy.


Hope this helps, or at least doesn't hinder!


Still crossing my fingers

W&M xx

Link to comment
Share on other sites

Thank you all and apologies I am on my rubbish phone again. I am literally one day from moving and was signing over my house today so stressful. I burst into tears but I was also waiting on dad results which exacerbated the whole thing. Well.. he is doing okay. Pancreatic mass has decreased again... Bloody brilliant. The liver mets are negligible and not easily seen. Good results bit hard on this phone. WiFi now gone but will update more when have proper access. X

Link to comment
Share on other sites

Hi DG, hope all is ok with your Dad (and you!). You've been uncharacteristically quiet recently. I hope it's just that you're busy with your house move.

Love

W&M xx

Link to comment
Share on other sites

I too have been checking this space regularly. I've messaged you but I know that you don't have the best of internet access. I too sincerely hope that it's internet access and house move why we've not heard from you. Sending cyber hugs to you xcx


I'm not posting as regularly now that we have lost Louis and Mark. I suppose I'm burying my head in the sand as I don't want to hear how more families lives are being blown to smytherines (spelling?) by PC. If I don't think about it, it doesn't hurt xx

Link to comment
Share on other sites

It's a late response but just had a quick look at your latest news with regards to the scan and I am really happy for you all. That's great news. I am a little like PW in that I often find it difficult to look at threads as it's too upsetting for me. Fingers crossed the good response continues

Ruth xx

Link to comment
Share on other sites

Thank you everyone, it means so much to me that you posted your support on this thread. Yes W&M I have been uncharacteristically quiet. The move was a nightmare and 2 days later I went on holiday with my sister with no WIFI or 3G and so I was very limited in my responses. I got home and dreadful BT had not connected the broadband and I know everyone has their problems on here but they could not possibly be as bad as how the kids have professed to be suffering without online access! They have driven me crazy.


As I reported dads scan was positive and the liver lesions are negligible and the tumour has shrunk. They have also said that it is has a more plaque like appearance but I have not idea what that means (scar tissue perhaps?). All lymph nodes are now normal range. I am yet to send it off to prof nanoknife for a second opinion but these are interesting results as he has not been on the trial drug for 2 months and the trial drug was reintroduced last week.


Dad though is getting neuropathy and can barely feel the bottom of his legs and this is a worry. It is his biggest risk in terms of getting kicked off the trial and I intend to up the natural support of this.


The thing that I am looking into now is this.. if this shrinks enough does it get regraded for whipple? I have not heard of such a story but surely if the mets disappear that has to be the option? Has anyone seen this happen in your research. Being me, letter is on its way to the original doctor that referred him to Oxford for whipple. I am also writing again to the the NHS oncologist who has not bothered to reply to our letter re Folfirinox. It will be a stage 1 complaint letter with him copied in. It is really not acceptable to have no response.


On another good news front though.. dad tumour biopsy is with the trial and we should have the results in a few weeks. Fingers crossed it will show us he is one of the lucky buggers who will respond to another simple treatment (unlikely but you have to hope!). x

Link to comment
Share on other sites

Great to have you back DG, how I've missed your energy and positivity! I've missed your naughtiness too but I don't suppose the moderators have!!


Anyway, if I see anything on Stage 4 downgrading to operable I will certainly share.


Re the neuropathy, as you know I have no medical credentials but you may be interested in the following. It was posted on a US forum by someone whose opinions and info I've come to respect:


"I had severe neuropathy. Numbing of the hands and feet and severe leg pain and freezing. My neurologist prescribed a bunch of different things to try. (Gabapentin or Neurontin and a few others) nothing had any affect and things were getting continuously worse. Finally he prescribed Metanx which contains L-methylfolate as Metafolin, a calcium salt of vitamin B9, methylcobalamin vitamin B12 and pyridoxal 5-phosphate vitamin B6. It didn't eliminate the neuropathy but rather reduced things a good bit making it bearable and it definitely stopped getting worse. I don't know how your insurance will cover it because I believe it is considered a food supplement rather than a medication. Mine does not cover it so it costs $58.00 a month. Everyone is different so I don't know if it will help you but just wanted to let you know what was helpful for me. Hope this helps."


NEGU


W&M xx

Link to comment
Share on other sites

PCUK Nurse Dianne

Thanks Ladies for your input on the issues of neuropathy.


I came across an interesting article some months ago when investigating some alternative treatments for a support caller and this information may be of interest to you. This was in relationship to diabetic neuropathy, as you may know this is common in those diabetic patients who have some impairment in their lower extremeties. As this is a natural product, this may be worth considering and seemingly less expensive as would be available from your local health supplier.


The article mentioned the importance of Vitamin B12 in treating diabetic neuropathy, and also the positive impact of Gamma Linolenic Acid (GLA) in some patients. GLA is found in both Borage and Evening Primose Oil. As I am sure many of you will be aware Evening Primose Oil is used as an alternative therapy in many conditions and is readily available form health food suppliers. There is a link here that may be helpful for you to read, and of course other associated articles that date back to the late 1990s.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192992/


I hope this will make some interesting reading. As we would normally suggest if you are considering any 'alternative therapy products' including vitamin and herbal replacements, please do check with your medical team in the first instance to ensure that there is no contraindication with your current treatment.


Any feedback would also be beneficial if anyone is taking any of these supplements.


Dianne

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

Free phone: 0808 801 0707

Email: support@pancreaticcancer.org.uk

Link to comment
Share on other sites

Thanks both,


My dad already takes this..


https://www.amazon.co.uk/Acetyl-L-Carnitine-Lipoic-Capsules-Delivery/dp/B00LZOFTBA/ref=pd_nav_hcs_bia_t_1?ie=UTF8&psc=1&refRID=PV27HJT757E48SPAWDA9


and this B vitamin in drop form..


http://www.metabolics.com/b-complex-liquid.html#third


It's composition is B1 945%, B2 730%, B3 156%, B5 425%, B6 765%, B7 200%, B12 20000%, Folate 200%. I am extremely pro B12 as I do believe this was the turning point in my long term neuropathy.


I will look into the other suggestions tomorrow.


W & M I am glad to be back, I am sure the moderators get my heart is in the right place. It is only twice I think they have deleted something I wrote and of course the occasions the name changes of infamous professors.


The trial scientist is encouraging dad to take an extra week break but dad is feeling okay and doing generally well considering and he does not want to. My mum is a bit keen as she wants them to go on holiday but I am with my dad. If he had a break now and then it started to grow then we would be gutted and questioning. I think wait on the next scan myself and until I get the answers on the folfirinox and also the chance of the Whipple if the shrinkage continues. The trial doctors have all said how amazed they are at dads progress so far and his general tolerance of the chemo because he is still on full dose and this is rare according to them but great news to me.


I did find a research paper that was written about 1 woman who had great response to Folfirinox that she subsequently had the op but I cannot find it now and I don't think it was the UK. But, what is the point of doing the trials etc if there is no operation outcome if the shrinkage is enough.


I have been out of electricity since yesterday morning whilst asbestos was being cleared from my electric cupboard so hence another delay being on here.


We are now on second week of trial reengaging and dad is doing well, he is coming round to rip the floorboards up of my sons room tomorrow. Here we go again... Hahahaha.


I am looking forward to going back to work Monday.


I hope you all have a restful night and keep all those chins firmly up.


xxx

Link to comment
Share on other sites

On a side note, the trial doctors have come back and said that the Oxford biopsy was not a biopsy but a scrape. Also, they have a preference to get the tumour as it is now so it looks as though we will be looking to get a biopsy done properly. The trial are writing to the NHS for this but I am not holding my breath of a positive response and wish they had not mentioned it because if they had not offered to write I could have convinced dad to pay for one. Hey ho... I suspect the NHS are going to get sick of my letters! I will give them 2 weeks to respond to the trial doctors before my 1st polite letter to them. x

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. By using our forums you agree to our Terms of Use and Privacy Policy.