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January 11, 2013 at 7:25 pm #20926
UK resident; eight years holiday home owner in Florida
Following a small mole on my left leg removed in 2007 I have gone from a high success rate of 90% to three years later having two tumours removed from my lower leg and a large skin graft, to IV in October 2012 with one tumour surgerically removed from my left side (lower back region) to having confirmed via PET tumours in both my pancreas and left lung – both around 2/3 c.m.
I have been reading your very informative forum for some months now and am now having some downtime in my home in Davenport Florida and trying to enjoy the lovely weather!
I had ‘nearly’ arranged an appointment with Dr. Weber at the Moffit Centre in Tampa, just to try to have another opinion on my current situation, but unfortunately, although all my scans etc., were sent just before I left they rang and advised he wasn’t available.
I am being seen by a multi disiplined team in London and since my PET on 8th November, I am playing the ‘hold’ game until 24th January when a further PET will be carried out and provided all remains the same surgery will take place, although it is questionable due to the position of the tumour close to the heart. I do have private care in London and cyberknife is also a consideration.
I tested BRAF negative (I never do well in %!! look at my 90%) and have decided the word percentage is now banned. I am currently being tested for C-Kit (awaiting results) and I also saw the posting on here for N-RAS so I researched in the UK found where the test was carried out and sent this information to my London Prof. just before Christmas.
Knowing my tumours have been there since at least early October, which I found out whilst here in Florida, has been a long wait, and many times I have just wanted some form of treatment, but the approach is to wait and then have another PET scan to reassess before surgery.
So this is just a thank you for all the information I have found on this forum and I have a bit of light reading whilst here as my neighbour in Florida has just purchased the book from this forum for me.
Best wishes to you all and thanks for all the info again.
DianaJanuary 11, 2013 at 7:50 pm #58497SusanBParticipant
I was also diagnosed IV in October 2012. Although I’ve lived in the States since I was 5 (a
long time ago!), I was born in East Yorkshire and will be returning to England in May for a short visit.
I wish you well. Please keep us informed about how it’s going for you.
–SusanJanuary 11, 2013 at 9:11 pm #58498patiParticipant
being BRAF – does not exclude you from yervoy or anti-PD1, if you get time to watch the webminars they are worth it. If you cannot find a good trial in UK, Paris (IGR) with Dr Robert is also a good option as is Brussels (Prof Neyns). In London just make sure you are in center of excellence (Royal Marsden, or at Oxford with Dr Middlenton) also because they are most likely to get innovative trial, including immunotherapy.
I hate waiting and in the past 3 years navigating stage IV around trials in Europe I often became overactive in finding trials that I could maybe possible enter. So it becomes another way to channel anxiety,
I also realized that above all you have to remain the CEO of your life, and the strategy of survival is mostly dictated by your time/energy and resources to find the support which many patients in EU never get to do…
Keep us posted, I know there are trials on anti-PD1 in EU that will opening (Catherine is the most up to date with these),
PJanuary 12, 2013 at 9:11 pm #58499
Thanks again for more information Patti I will look into it all. Yes I have been told I can have Ipi but in a way I am hoping surgery or cyberknife may hold it for awhile before ipi. It will depend on my PET scan at the end of January.
Susan, really sorry to hear your news and I hope you have a lovely break in the UK, with some nice spring weather. We are in Essex so quite a distance from yourself but handy for short hops around the UK/Europe as the airport is only 10 mins away.
Like many others I am trying to keep some quality in life and my sister is now in Florida with myself and husband, who 15 years ago had M.M. but it was caught early and never returned. We both have lots of moles, my sister fair skin, me an outdoor girl all my life, no real creams in those days (age 52 in March) but dark skin.
Having a supportive family is great and I hope as many people as possible have this in their lives. Two sons, daughter in laws, two year old granddaughter, all keeps me smiling on many a day and a lovely springer spaniel, so walking two/three hours a day at the moment. How long I can keep doing that remains to be seen but my husband won’t let me rest on my laurels for long.
I will log in and update once my next treatment starts, I wish I could offer some advice to others but you all know far more than me.
DianaJanuary 14, 2013 at 12:46 am #58500
You might try getting another opinion from Richard Joseph at MAYO Clinic in Jacksonville Florida. He had the MERCK Pd1 trial going there. Or skip across to Los Angeles and see if you can have an opinon from Dr. Ribas. Both would be excellent. There are many PD1 trials opening in Europe, but none in England for the Merck PD1 I know. Let us know your choices for location and we can work on it.January 15, 2013 at 11:22 pm #58501
Thank you for your response andI have made a note of the names and trial options.
I am also reading both the TIL and PDI threads on this forum and will do some more research before my next PET.
DianaFebruary 16, 2013 at 3:17 pm #58502
Great news for many people being successful in one way or another on either Ipilimumab or Zelborah and thank you also for all the helpful information that remains on this forum.
I thought I would update since returning to the UK in mid January 2013 –
As I said my PET/CT scan on 8th November 2012 threw me into being an IV Melanoma – not a happy place, I had hoped my tumours in my lower leg in 2010 would not roam any further after being surgically removed. Not to be the case and the first next tumour I found myself in my flank/gluteus or I think I read ‘love handle’ was in October 2012. My Prof. was so sure this lump was due to my back surgery 10/12 years ago and it would not be a tumour, reasons = wrong side, no swollen lymph in my groin, but I insisted they do tests that day, x-ray and then they continued on and on until a FNA taken and I waited.
So off to my holiday home in Florida in October, a week after arrival the phone rang and I was right another MM – how I hated that! I flew home had the PET/CT and this tumour surgically removed 3.4 x 4.4 cm in November 2012, day case and out and running as soon as possible!
The next blow – two tumours one Pancreas & one Lung. I had to supply a disc as at my appointment in London they didn’t have a copy, then to make you laugh they couldn’t read it, so they rang the Harley Street Clinic and were told on the phone and I could see what he was writing down. Not very efficient and patient friendly are the only words I can think of.
It was decided to wait until a further scan on 24th January to wait on the tumour changes.
The UK London hospital’s inefficiency has continued and I will keep it brief but the PET/CT broke down despite three attempts and I was then sent again to Harley Street in a cab for them to carry it out. All day 10 am – 6 pm before I got home. More happened but we then both agreed to ‘discharged’ on my next appointment when I decided enough was enough.
I am now under a Dr. in Cambridge and things are moving;
The scan confirmed back to three tumours – an extra one a small bone lesion.
A small increase in size to the lung and pancreas
I was tested for a trial IMCgp 100 but once again you need to be
HLA blood type and I was negative
I have been advised chemo will have to be issued first, failed and then they will start ipi as second line –I understand everyone has CTLA-4 protein so no test. This is booked for 1st March in Cambridge.
They will be testing me for NRAS
C-KIT test was stated would be carried out in London – No reply after phone calls and emails. – Will chase yet again!!
I already knew I was Braf negative in London
I pushed & pushed politely as possible and next Friday 22/2 I will be meeting someone from the cyberknife team at Mount Vernon Hospital. I can’t find too out much information and still wonder whether this would be an additional weapon against the disease in my case. Next week my recent health record & image, and I have decided to send off general information, will be put into a team meeting. I also requested an actual appointment not phone call.
I am sorry it is so long and I need to stop all the bits of research paper and misplacing them, so frustrating but I am putting it down to the menopause and don’t like that either!
I will let you know what happened regarding cyberknife and how the drug and any trials start at the beginning of March.
I hope I might be able to give you some helpful news at some stage.
Diana PayneFebruary 16, 2013 at 6:30 pm #58503
Your attitude is commendable and spirit inspiring. I don’t think we can tell you more here except there are the options of PD1 trials throughout Europe, only the BMS is in the UK I believe and then there is the TIl therapy in Manchester. You will do better financially if you stick to the EU or UK.. not the US. Hope things become a bit less bumpy for you!February 17, 2013 at 12:06 am #58504SusanBParticipant
I wish you well, Diana. So sorry about all the frustrations. Please keep us informed.
SusanFebruary 17, 2013 at 11:03 am #58505
Thank you both for your replies. Sorry I do type rather too much.
I am so pleased that some do not need to ‘chemo’ before ipi and also really happy for those that have since gone on to be NED.
I did have a surprise email from the Prof in London, this morning Sunday – crikey! who I had requested a CKIT test back in December. I will be receiving it shortly. I then pushed my luck and asked him to move across my ‘bum’ tumour (taken in Nov 12) over to the new Dr. in Cambridge or tell me how to request it asap. My complent letter was shelved and I put on my nice response very quckly.
That will be three tests – braf, the trial I mentioned via blood – both negative and try again with C-Kit. I will update you on this.
I will also update you regarding cyberknife – I am sending a ‘personal’ letter to add to my standard scan/doctor health info to try to understand more. I just want to given full consideration when I see them on Friday with a very bright friend (always helpful for me!).
Thank you for your other suggestions, TLC, Anti PDI, all on my paperwork and if ipi fails I will hopefully be well enough to follow these routes. I also have VATS for lungs – chap in Cambridge again, so he is on the hit list – god help them with me!
DianaFebruary 18, 2013 at 2:16 pm #58506AnonymousGuest
Keep fighting Diana! And don’t worry a bit about using lots of ones and zeros.
JeffFebruary 18, 2013 at 9:56 pm #58507bettinParticipant
my husband was also treated between different places and I can only strongly recommend you start your own medical file- requesting copies of ANY scan, report and letter done on you.
It might require some *insisting*- I got quite tired of being told ‘oh, but I’m not sure I’m allowed to give you a copy of your images’ after we had received x copies before at the same place- but it’s worth every minute you sit there waiting. We delivered scans and reports ourselves- much quicker than anything else.
Unfortunately, no place is good for everything, so there seems no way around informing yourself and then finding the place where you can get it done.
Wishing you all the best,
BettinaMarch 12, 2013 at 10:03 am #58508
I am pleased to read more positive news coming through and the lovely picture of the lady and dogs – beautiful.
My update; Came back from Florida end of Jan to have the PET/ct knowing I had two more tumours (pancreas/lung) since October, only the bottom one removed day surgery.
The PET/CT machine broke down three times with me and a lovely man being put in a cab (funny journey) to a Harley Street Clinic for them to carry it out – from Radium inserted until done 4/5 hours – never too sure who good that scan was! but out all day.
Met the oncolgisy and decided we were not compatable, so when I received my ‘discharge slip’ – my husband and laughed when looking at the words in the form (was I cured!!) Extra tumour near the shoulder somewhere on the scan.
Had my eye on a Cambridge Doctor so asked for a referral immeditely. Told do not ring yourself and make an appointment – WAIT! Two days later my eldest son was out my house and is now my CEO and supporting my case – brilliant, younger son sorting much else plus two businesses and ‘where is all the money Mum’ – he is now in charge of the household account.
The referral didn’t turn up, the lovely new Doctor rang and her secretary helped me for the day – the reason for no referral;
I am in a pile and London have been told it is not important – YES it is!
I don’t have the address in Cambridge – Let me google it and give you the address, followed by now knowing all about a link that transmits it….. – Day work
Made the appointment at Cambridge, eldest son and husband on tow. Very pleased to met her and she did a blood test for a new trail but I did fail and few days later – she emailed the news. It sounds another drug that may be good soon – I think I did put it in here.
I have since been to discuss Cyberknife in London with a friend, booked ourselves and trotted along – nice chap (Mount Vernon Hospital) and he was interested in taking out all three tumours. I had a feeling it would be heading to my brain he wasn’t convinced – wrong again.
Went back to Cambridge to start a treatment – chemo was on the list I wanted Ippi – I got Ippil last Friday the first treatment. I also had a CT scan and the wednesday morning what I thought was a blocked ear was so bad I asked the Doctor who was in London to check it and it was a tumour. We decided still to go ahead with ippi meantime. Both sons, my husand turned up with me looking like top Gun behind me….they were making sure all was being carried out correctly. They sat in the room for 4 plus hours. My husband made sure he had his sandwiches! I think the cost was around £15K for the first treatment. Since today no symptoms.
MRI has been carried out on Saturday to look at the brain tumour. Been given some steriods and am waiting for someone to decide what to do next….once again my eldest is on the case – he is not letting them leave baby in the corner (he is 27 I don’t think he knows what that is LOL)
Good news another grandchild coming in Aug/Sept. Bad news didn’t sleep came down on the sofa my springer spaniel laid with me after a lamb dinner, not nice, husband jointed us 4 am – rather have the dog LOL
All for now sorry can’t work out spell check – first sign of brain tumour – I couldn’t spell or read, tried new glasses, expensive mistake!
Have taken some more info – thanks again to you all, wishing you all as much quality time.
DianaMarch 12, 2013 at 12:37 pm #58509
You certainly tell a good tale and I wish you weren’t going through this rollercoaster ride. The dog and the lamb dinner, I can just imagine.
Re: your tumor, are they going to do radiation, preferably gamma knife? That may help things along with the IPI.. Take good care and keep in touch with us.March 13, 2013 at 9:29 am #58510Kay6789Participant
Hi Diana I have just read all your posts here and although I’m a new member my husband was diagnosed with stage Iv in may 2012, we are also in England and live very close to Essex! I was wandering what hospitals you are using as it sounds like your not having the best of times with them? (not something you need when going through what your going through!) we are with Addenbrookes in Cambridge and we also use the Royal Marsden in London for our second opinion both of which I would highly recommend, I hope you and your family get things sorted ASAP! Melanoma is hard enough to cope with let alone having problems with hospitals!! Good luck and all the best.
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