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Mum of 42 recently diagnosed inoperable PC


Ruthus
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Oh Ruth, doesn't that make it all a little bit more bitter. Just like my dad you are fit and healthy. When my mother hacked his medical records for the scan results and we saw 'in keeping with pancreatic adenocarcinoma' I was reassuring them all. Of course it isn't, just a false reading as can happen. He is a runner, he is underweight, he has never smoked, he hardly drinks, mean age of diagnosis is 72. But you hold on to the fact you have your youth and your fitness behind you and measure that to the 25% stat I put on my thread yesterday. We will help you fund raise, when me and my son sign up to the Great North Run next year we will help you build your funds on your Just Giving page (if you don't mind of course). x

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I know it's crazy isn't it DG. I have always exercised whether it's running,cycling,swimming or aerobics. I eat healthy and have always had healthy weight. I haven't drunk alcohol for three years as just don't like it. I am not a saint by any means. I used to socially smoke when I was in my 20's but never been a regular smoker. To be diagnosed with this at 42 just doesn't fit with the average stats. However it also shows cancer can happen to anyone.

I have read a number of stories in the real life section where many have been fit and healthy people prior to diagnosis.

Good on you for signing up for the GNR next year. If I was able to I would love to run it again.


Ruth xx

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Yes you will do it again Ruth, be sure of that.


I am relieve it was nothing personal! Yes by all means get in contact when you are reading, either by email or text or whatever. I have lots of time on my hands and like to keep busy. I'm also a very good "organiser" so whilst I can't offer any help or participation with the sporty bits, I can most certainly help with the admin side if you want or perhaps trying to get companies to donate items for auction etc?


However, your own health has to be first and foremost so whenever you are ready.


lots of love

PW x

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I've just had review at Hospital and results of MRI scan. There are 2 small tumours on my liver. 1cm x 1cm. There are others but these are negligible and so not measured. As the scan was taken before I started this chemo the hope is Gemcap chemo will shrink them. I will have repeat scan after 3rd cycle of Gemcap which will be start of November. If scan shows reduction the plan will be to have further 3 months of Gemcap.


I will also consult and have scans sent to Prof in London to be considered for liver ablation on the tumours. Initially I thought I would wait until after the next CT scan before I send them but I might just see if the MRI scan taken a few weeks ago before Gemcap started can be sent for him to view if only just for his opinion and whether the two tumours are in areas which could be ablated. I will email my Consultants secretary today to request this.


Hopefully the Gemcap will work its magic in the next few months. We also discussed latest news on Immunotherapy drug which has shown promising results in small scale London study. It will take too long for the larger scale trial to be set up but I'm Aware of a private doctor on Harley St who uses immunotherapy and am planning to arrange a private consultations with Him. I asked the doc today if I could go ahead and have Consultation with this private doctor. She said yes sure but if I want to have private immunotherapy treatment whilst being treated with Gemcap I would need to let my NHS team know as understandably this could have implications She said it's probably best to have the Gemcap on its own then consider the immunotherapy. However I'm going to book a consultation with the doctor in London and discuss with him.


I am feeling totally fine and really good at the moment. I knew there were tumours in my liver and my main worry was that they would tell me today that there were about ten tumours and all massive so to have 2 small ones feels ok. My bloods have come back fine today so we are good to go ahead with chemo tomorrow. We are then flying to Spain tomorrow afternoon and I cannot wait to get into the swimming pool. I have not been able to swim since my central line was fitted last December. I had it taken out last Friday and the dressing comes off tomorrow and I'm allowed to swim!!


I look forward to hearing from Rob and Justamo and hope today hasn't been too difficult. Sending you lots of love

Ruth X

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Hi Ruthus, sorry to hear about the scan results. But like you said it's good it's only 2 (funny how we find 2 tumours a good result!?) and they are so small. If it's the Dr on Harley street I know of, he wants you on gemcitibine while you have the immunotherapy so it wouldn't be countering the chemo.


I'm surprised they are keeping you on gemcitibine though now there are liver mets, usually that's the time to switch to folfirinox as, unless I'm mistaken, it specifically targets liver (like Abrahams) but they are probably hoping they can save that as a back up if they need it. Though as it seems to do so well for people then maybe have a word with them?


Get the scans off to the Proff and see what he says. To be honest he will say you need newer ones so he can see what it's like now but it's a good indicator. The fact they are so small means he'll be able to deal with them I'm sure. Carl's always been on folfirinox when he has had it done and the Proff wanted him on that but I expect gemcap will be ok too as he like the chemo in the system while the procedure takes place.


If you ever want any info off me just let me know, can contact me through the nurses on here and they will give you my details


Rob

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Thanks all

I am typing this whilst having gemcitabine infusion so am only typing with one finger so will keep it brief. Thanks Rob - I will contact the PC nurses re exchanging emails as I wouldn't mind asking a few questions.

After sleeping on it, it's going to make more sense in sending the Professor my scans after I have had the next CT scan in two months time. I doubt it will be any use sending the MRI scan results now as this was done a month ago just before treatment started so will be better to have all scans sent in two months so he will be able to compare.


I am going to contact the Professor on Harley St for a consultation as soon as possible. This will be regarding immunotherapy. I am aware that so far immunotherapy has had poor results in PC but I am interested in enquiring about the more recent one which has shown promise in the small scale London trial.


The reason why I've been prescribed Gemcap and not Folfirinox is due to fact that around a month ago when I was due to have further three Folfirinox my weight had dropped and my Oncologist weighed up whole clinical picture and gave a lot of consideration to what would be best treatment for me at this time. He felt I was too weak to manage Folfirinox. After three cycles of gemcap we will review. I am aware that Foldirinox is best for metastatic disease and I'm not sure about gemcaps success with mets but am trusting my Oncologists view.


You are right in saying it's funny how having two tumours in the liver can possibly be seen as a good thing!! I was horrified when I found this out a month ago and now having two small tumours seems fine!! Crazy.


I hope Carl's consultation went OK yesterday.


Ruth X

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Hi Ruth


I can just feel your desire to swim, so swim for England! In the grand scheme of things, your scan results are very good. Gemcap WILL get those little blighters.


Have a wonderful time on holiday, we look forward to hearing all about it on your return.


Lots of love as always

PW xx

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Hello all


I have been in contact with Prof nanoknife requesting he casts his eye over my last CT and MRI liver scan which showed two measurable 1 cm liver mets. The scans were taken one month ago at the start of Gemcap and I know the most important scans will be the three month post chemo scans, however I wanted the Prof to see if the tumour's are in areas of the liver which will be amenable to ablation. He answered my request promptly and has asked that my last scans are sent to him so I've emailed my Consultant to request this is done.


In the meantime I am coping well with Gemcap. I'm on the 2nd cycle now. We have escaped to Spain again and we cycled 50 miles on the road bikes from our place to the coast yesterday. It's 3.5 months since the whipple so it felt amazing to be out on the road bikes again. It was mainly flat and downhill but I'm still very pleased with the fact I did it!


My weight is stable and I'm eating pretty well. We are very close to finalising the fundraising quizzes and my other half is in process of finishing this so details can be posted on the PCUK site over the next few weeks and people can do this set quiz on a date in November if they choose. The idea being the quiz can be run nationwide during PC awareness month in November.


PW I will contact you personally very soon I promise. Sorry I'm being so tardy. Carl and Rob I would also like to contact you both and will request we are put in touch via the nurses.


Love to all Ruth xx

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Wow, 50 miles Ruth, you are obviously feeling better now, that's great to hear, see the taking it steady paid off, told you so! lol

The quiz idea sounds fab too will await the details with interest.

Hope the chemo continues to do its job and that you can get the ablation sorted, what is happening on the stoma reversal front, will you be able to have it done here in the UK or will it mean another trip to Germany for you?

I hope you enjoy the rest of your holiday, take care love sandrax xx

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Hello Ruth


That is great that Prof has responded, his promptness is so appreciated in these things and he seems such a great person. One of those that instals hope in this dreadful situation.


I am glad you are enjoying Spain and it is incredible you have managed 50 miles after that big operation. I hope such determination will get you far in this journey. It sounds like you are doing really well considering all you have been through and are going through. Once we know details of the quiz I will speak to my sister and friends and see what we can do to help.


For now, let us all see what today brings and make the most of it.


xx

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Ruth, my mouth is wide open - and for once, not because I'm expecting to be fed LOL!


What an amazing lady you are. Cycling 50 miles? That's one in the face for PC. Have you been in the pool yet?


Please don't apologise for not being in contact yet. You have more than enough to contend with. I'm here whenever you are good and ready.


Lots of love xx

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Thanks all


I have to say the 50 mile bike ride was all flat or downhill but I was chuffed that I was able to do it and it felt really good to be out in the sunshine with blue skies and soaking up the birds and mountain views. It's amazing how simple pleasures are the best. It was also brilliant to swim in our pool. The temperature was just about still warm enough for me. It was 29 degrees in the pool. I am such a wimp and like it to be 30 plus degrees.

I was delighted as I got on the scales two nights ago and was 8 stone 1!! That's the best my weight has been in three months. I'm currently sat waiting for my bloods to be taken and if ok cycle 2 of Gemcitabine this p.m.

My scans have been sent to Prof knife for viewing so I'm awaiting feedback and I've also had a response from the private Oncologist in London regarding a consultation about immunotherapy or alternatives. I will await feedback from Prof first and although I would like a Consultation regarding immunotherapy I won't jump into this until certain it's the right thing for me.


Ruth X

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8 stone 1lb in my dreams only but fabulous to hear of your weight gain Ruth!!! That's really positive. If you like home made jams/chutneys, let me have your address privately and I will send you some. Very calorific but super healthy too because they contain 50% fresh fruit!! Joking aside, they do contain 50% sugar so I'm not sure if you would be able/want to eat? By the way, google Ali Stunt if you are not aware of her. A PC survivor who I beleive was diagnosed with type 3 diabetes which I think is the different type of diabetes your mentioned on another thread.


Moderators - not sure if I'm allowed to mention names so I understand if you need to modify. Apologies if I shouldn't have.


Love to all, hope chemo went well Ruth xxx

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Actually it any of my forum family would like jam, please message me privately. I make it as a hobby/relaxation therapy. When I'm in my kitchen, I'm a million miles away from PC - a great place to be! However being diabetic, I can't eat much of it so I happily give it away. xxx

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That sounds lovely PW

I will send you my address and I would love to try some of the jam. To be honest I have always had a sweet tooth and I'm finding it difficult to not eat sugar. I am allowing myself chocolate, biscuits, cake and jam but just in moderation. I have been going crazy for fruit recently. I think it's because it's fresh and helps when feeling nauseous but I am aware that fruit contains alot of sugar. I've also found that I want fruit sweets or real fruit juice ice lollies due to horrid taste in mouth because of the chemo. It's all sugar though which isn't good. I am just going to have to be careful and sensible with it.

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It would be my pleasure! I'm going to the post office tomorrow to send some family members so if you can text me your address or send it by email before lunchtime if you read this message in time that would be great, otherwise it will have to wait until after my Kate Winslet moment.


Just keep an eye out for oral thrush - my hubby had that and it affected how certain foods tasted.


Lots of love

PW xx

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  • 3 weeks later...

Hello all


Hope you are all battling on as best as possible. Well it has been an eventful and very busy few weeks for us. I escaped to Spain yet again last week to get last bits of the sunshine before the temperatures drop. I managed to join a cyclist friend on a 20 mile bike ride. She was doing 200k cycling in one day to raise money for a local cancer care charity.


We returned from Spain on Monday night and then I was on the train to Euston on Tuesday as I had been contacted by the London hospital where I was due to have my liver ablations on the 26th of October to say there had been a cancellation and did I want to have the procedure done on Wednesday the 12th of October instead. I said yes and it was all systems go. We are lucky to have friends who live in London so we stayed with them.


I was admitted at 11 a.m on Wednesday and promptly seen to by the nursing staff. The anaesthetist and Consultant visited me to explain the procedure. I was taken down to theatre at 4 p.m where I had a general anaesthetic and awoke 2hrs later groggy and tired but back in the hospital bed with procedure completed. The Professor told me he had successfully ablated the larger of the 6 tumours on my liver. He still classed them as small though which was good to hear. He had originally seen 7 lesions on my liver at the scans taken 2 months ago prior to commencing Gemcap chemo so it could be the chemotherapy has got rid of one. He told me the chemo was working as the sizes of the tumours had shrunk and my CA-19's have also dropped.


I slept most of Wednesday evening and night then woke on Thursday morning feeling really ok. I was discharged 24hrs after I had been admitted. I felt slightly tender but that was all. We went to visit the Pancreatic Cancer UK fundraising team on Southbank with our fundraising ideas. It was great to meet the team.


I then had a consultation with another doctor in London. He had been recommended to me by someone who has suffered with pancreatic cancer and had found him very good. There is some information and advice which he gave us which I think would be valuable to pass on to others. Firstly he told us we were doing the right thing in continuing with chemotherapy and having liver ablations to try to keep containing and managing the disease. If it can be afforded liver ablations can keep on being given and people can continue with chemotherapy at the same time.


I asked him about immunotherapy and there are some interesting developments being made and once I know more information I will share this with others. I asked him about nutrition,diet and supplements. I currently take a good multivitamin, slow release vitamin C, high strength tumeric, aspirin 75mgs and bitter melon. He did not disagree with any of what I was taking. He told me it was a good idea to take the aspirin as 20% of PC patients will develop a blood clot.


He advised I also add in Cod liver oil, a good pro biotic, liquid Vitamin D3, Echinacea, Milk Thistle and go gluten free. I have an ileostomy so nutrition and absorbtion is difficult however the doctor said that anyone who has had the whipples could suffer from malabsorbtion and these supplements can help. The milk thistle is liver clensing and he said that chemotherapy places alot of strain on the liver so this is good. He stated that anything which is anti inflammatory is good to take. He states that gluten causes alot of digestive problems and cloggs up the system so going gluten free is defintely a good thing.


We also asked him about the value of cannabis oil as I have had friends passing on information about this and have also read alot in the news. I have not tried this yet but wanted to hear an expert opinion on it's value. it's very difficult to know what to believe when you hear many different view points. His view was that many clients may gain value from taking cannabis oil it that it helps with the side effects of the chemotherapy such as nausea, pain and weight loss. However in terms of anti cancer properties he stated that the research which has been completed has involved mice and not humans. He stated that the amounts a human would have to take to have the anticancer effect are so large that the person would basically be knocked out and very very stoned! So at the current time I don't think I will bother.


I am booked into the London clinic on the 26th of October to have the next liver ablations. I am then due to have a CT scan and MRI scan in early November.

I will be escaping to Spain again inbetween!


Ruth xx

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Hi Ruth

Gosh you have had a hectic time recently. Thanks for all the info from your consultation. I'm curious to know if his specialty is oncology. Fantastic that you managed the PCUK office visit straight after your discharge, and I'm so pleased to hear that the GemCap is doing what it's meant to!

Love

W&M xx

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Thankyou W&M. Yes, the doctor works in Oncology. His practice is on Harley Street and he has very good connections with emminent people in the PC world. He informed me about an interesting trial involving immunotherapy which is on the horizon. I will keep you informed as I have requested that information is emailed to me once this trial becomes a reality.


I know many will have their own opinions regarding issues such as diet, herbal medications and treatments but I think it's important to share information gained from consultations and hope me passing on this information from specialists is helpful.


I am so glad your husband is doing well. Long may it continue.


Ruth x

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Hi Ruth,


There is so much debate around the use of alternatives and taking a holistic approach. I find it is a minefield with one study stating it can worsen PC whilst for the same product another one will say it makes it helps.


What I do know is that, whilst you are feeling reasonably healthy otherwise, it can make you feel more empowered and in control of the the path you are working. Well that is how it has worked for us, especially with my mum. I think evidence is emerging that some alternative treatments can add benefit, either in median survival or by helping with the quality of life aspects of fighting the disease.


Our GP is very much into alternatives. He was very keen that dad has absolutely everything we can as organic and limit processed foods. This was said to us from the very start on my first meeting with him after dad was diagnosed. Dad's house is as natural as possible as well - including cleaning products etc.


Have you also looked into mistletoe treatment - It is also offered on Harley Street. There is a few alternative medical practitioners on Harley Street within the reputable organisations if you do like want to explore areas like this further. Mistletoe therapy article is here if you are interested...


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860234/


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4971628/


It is something I will work on with my dad when he is off the trial. I am hoping to get him to the alternative therapy doctor on Harley street anyway but we shall see how that pans out with him!


It isn't for everyone but thought you might like to take a look at it.


Glad your liver ablation is also going to plan as well and that you will get to lovely Spain again soon.


xxx

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