Pancreatic Cancer Survivor

[auspete]

I was diagnosed with an inoperable adenocarcinoma in the head of the pancreas in Jan 2007. Yes, 6 years in a few months. Resection was not possible as the tumor surrounds the superior mesenteric artery. Treatment was 2 months Gemcitabine, followed by 30 days of very high levels of radiation concurrent with continuous infusion of 5fu, followed by 6 cycles of Gemcitabine. I continue to have regular maintenance chemo - a few months on a few months off. My quality of life is excellent and almost symptom free. My regular CT scans shows no change since diagnosis. This is the short of it all but I am willing to answer any queries.

[Hidden]

What a wonderful experience to read about! Thanks.

To what do you attribute your success - physical, mental, spiritual 'stuff'??

Very best wishes,

Isadora.

[auspete in reply to Hidden]

I am in good physical condition and maintain a positive attitude - in fact most people don't know I have cancer. I am not a spiritual person. I have a very good medical support team and feel that because of my longevity, I do enjoy special attention. See my earlier comment but my hENT1 transporter allows Gemcitabine to quickly reach the cancer cells. I should mention that I live in Australia where cost of treatment is covered under an excellent National Health Scheme.

[Hidden]

What a very lucky man you are Pete and a member of a very exclusive club!

[auspete in reply to Hidden]

Thanks Jane. It would be interesting to know if there are many other advanced inoperable PC sufferers who have survived almost 6 years.

[Hidden in reply to auspete]

There are two I know of Ali on here being one, who have survived 5 years (Ali will correct me if I am wrong!) and a girl called Jolie Kelsey, who was 22 when she was diagnosed whilst pregnant. As far as I know, those two are the only ones, but, I could be wrong!

Take care

Jayne

[Bradbury]

It's so nice to read your story, in the mountain's of gloom. long may you continue to have good health, good luck and best wishes,

Christine.

[auspete in reply to Bradbury]

Thanks for your kind comments - I appreciate it!

[auspete]

I am extremely fortunate to have a remarkable response to Gemcitabine and research institutions are looking at possible reasons for this - hopefully we can identify something quickly. I have a positive attitude but it is easy to be positive when my medication is so effective. Also, I think that my initial extreme dosage of radiation destroyed the DNA of the tumor so when the cells try to multiply, they don't know how to.

[kennymorris]

Pete

I had the wipples opperation in march 2010 and every thing was going well until a pet scan in march this year showed that the tumor had reappeared and this time an operation was not possible. I started chemo treatment in April on a trial taking Gemcitabine and a drug LDE225 (anyone else on this drug) I am feeling ok and standard of life is good but starting to have a bit of back pain and take pain killers.

I have asked about raidiam treatment but the team at the hospital do not seem to favour this treatment. I have 3 treatments and 1 week off and have a scan every 2 months, the scans have been showing that everything has remained stable up to now. I just feel that there might be some other treatment out their that would help me live a longer life.

Pete you give hope to all of us that is fighting this horrible fight. I hope you carry on having a great life and enjoy.

Kennymorris

I bet the weather must help out there.

[auspete in reply to kennymorris]

Hi Kenny

Evenhough surgery is the only cure for PC, studied unfortunately show that the majority of patients will reoccur within 2 years. Where is the new tumor growth? There must be a reason for not offering you radiation and I would be interested to know why. I am a strong believer in getting a second (or third or fourth) medical opinion and for this reason I have one prime Oncologist and ready access to 2 others. We both know that doctors are not always right and my advise is "if it doesn't feel right it probably isn't". But I digress.

Gemcitabine continues to be the main treatment. Fulfirinox is becoming more popular and there is much discussion of whether it should become the prime treatment especially for metastatic PC - but it is very toxic. It is now 6 months since you started the trial and the scan results are encouraging. What are your CA19.9 levels? I would also be interested to know your Gamma GT and Alkaline phosphatase levels and the impact chemo has had on these. Have you misses any treatments due to low Neutrophils? Sorry for all the questions - ignore them if you wish.

Peter

[kennymorris in reply to auspete]

Pete

Please dont apologise, you are asking for all the right reasons. I am afraid I have not asked the question on my blood results only on the size of the tumor has it grown and it seems to be stable. I will pluck up courage and ask the question about the blood results and on the radiation situation when I go to start my 6th treatment on monday.

It is good to talk to someome who has been through it all and hear different ideas please keep in touch.

Kenny

[auspete in reply to kennymorris]

On reflection I agree with you - let the doctor worry about the blood. If you want to discuss anything with me please don't hesitate. Remember,

we are in this together.

[kennymorris in reply to auspete]

Thanks Pete I will keep you updated I start my treatment on monday I will update then.

Good luck to everyone

Kenny

[auspete in reply to kennymorris]

Hi Kenny,

I forgot this is a public forum and I should not have asked you for private details of your blood results. Please ignore my request in the note below and I apologise for the indiscretion.

Peter

[Wildleigh1434]

Pete

just wanted to say fantastic news on reaching 6 years.... i cannot wait to write that.... good luck with the ongoing chemo.... fantastic news.

dane

[auspete in reply to Wildleigh1434]

Thanks Dane

Yes, I am one of the fortunate ones. I read your reference to Creon in your Bio. I recently switched from 25,000 to 40,000 (units of Lipase). It is a far superior product (cost is the same) and I believe it is a different formulation. One 40K capsule seems more effective that 4 x 25K capsules. If you are subscribed a lower dosage and not particularly happy with results, maybe you could try these.

Pete

[WynPH in reply to auspete]

Hello, this is my first post. I had the Whipples operation in July 2014 and chemo (gemcetibene) for six months. Everything is fine except for the struggle with the Creons and getting the dose right. I have gradually increased the dose and now take an average of 20/23 a day x 25K capsules. I still do however suffer wind, diarrhoea and constant tummy ache and am slowly becoming very despondent. I was advised I could take the larger dose creon of 40K but so far this has been impossible to get hold of (England). Pretty fed up at present.

Wyn

[sharonz64 in reply to WynPH]

hi wynph understand your frustration. my mum was diagnosed with pancreatic cancer jan this year. she too had gemcetibene she is also still suffering with wind diarrhoea and tummy ache it is a difficult situation especially that it is impossible to get the creon 40mg. what a joke !!!! I pray you start to feel better. I pray your days become easier. God bless

[Wildleigh1434]

hi pete

im on the 40000... my problem is i forget to take them sometimes with not very nice consiquences... but my wife is getting used to it.... see you at a charityevent one day

dane

[sharonz64 in reply to Wildleigh1434]

hi just wondering where did you get the creaon 40,000? cant find it anywhere.

[cornelious]

wonderful news for you , my mom has had the whipped option 5 weeks ago and I hope and pray that she is celebrating 6 years in the future!!! god bless to us all

[doodle12]

Hi auspete,

Would love to ask you a couple of questions. My sister is on fulfirinox. She did 2 cycles and they took her ca19-9 levels which went up from 5000 to 6000. The doc said it was early in the treatment and that means that there is a lot of circulating cancer cells due to cell death. I we were concerned with the increase in numbers but felt better when he told us that. She has another ca19-9 test after her 5th cycle and we are hoping they will go down(and praying!!).

Her blood levels have been quite stable and she feels quite good. She is getting decadron 2mg daily to help her with her appetite and fatigue. It works well. Have you been on steroids also? I know long term they aren't so good for you, but they are working for her now.

We are so happy to hear of your story! Look forward to hearing from you.

[auspete in reply to doodle12]

Yes, I have been on Dexmethsone (same active ingredient as Decadron) but I haven't taken it in tablet form (4mg) for the past 3 years. It is primarily prescribed for nausea which I don't suffer from. I do however still have 8mg of Dexamethasone as IV prior to my weekly chemo (Gemcitabine only). Most people do not have any serious side effects with this drug, apart from keeping you awake at night (I have sleep problems on the night of treatment only). I am not sure what your other question is but my advice on the ca19-9 is don't be concerned by the number - it's the trend that important. There is a temptation to monitor tumor markers more regularly but patients tend to become unnecessarily stressed at increasing counts.

[meganne]

I am very interested to read the above post as I have just been diagnosed with adenocarcinoma on the body of the pancreas,

Inoperable as it is attached to the splenic artery and splenic vein.

I am a healthy 64 yr old female and live in south of France.

I have been told that the prognosis is poor but I am determined to keep a positive attitude.

I have a morphine patch for pain which can be unsupportable.Also I have been given prednisolone to improve my appetite as I continue to lose weight.

I start chemo soon and am scared about that.

If people are living longer than prognosis what is it that gives them a better chance

[mgreen58]

Hi Pete, read your post. I'd believed that pc was not survival much past 1 year but to read your story gives hope. My mother of 85 years is in the process of being diagnosed with some kind of pancreatic issue which seems to point to cancer. She was a picture of health a few days ago with her only problems being rheumatoid arthritis and degenerate joint disease of the lumbar spine. Now she's literally falling apart, besides the mid epigastric pain that infrequently radiates to her back she's experiencing multiple compression fractures in her spine. It this a common symptom or is it metastases to the bone? I'm driving my insane trying to figure out how my mom could develop so many problems in rapid succession. The entire family is depressed and I'm about to lose it myself. What are some symptoms others have experienced before being diagnosed? Sorry for my long post but I need help in dealing with my fears. The whole family will need support emotional soon. I welcome comments from all who want to share.

Mel

[sharonz64]

Hi auspete, My mum who is 79 years old was diagnosed with pancreatic cancer in January of this year. also an inoperable adenocarcinoma in the head of the pancreas. she had 10 treatments of Gemcitabine but not radiation. However, she is suffering with nausea and diarrhoea this has been so for the last 3 months. Have you any suggestions? she is on creon, unfortunately we are not finding the 40mg creon, onkt the 25mg. however, she no longer wants to take the gastro-stop, she is tired of taking medication. the latest scan shows no change in her tumour. but a grey area in her lung. Can you please tell me how to stop the nausea? the diarrhoea? and where did you receive your treatment? mum is currently with the Chris O'Brien lifehouse. Any diet tips?

I pray you remain well.

and thank you

[poppystorey]

Hi I have just read your testimony. .I was told in February I had a mass on my pancreas near the tail . I've had 2 ct scans which show it hasn't spread one endoscopy last week .I go for another one next week ,endoscopy with fine needle aspiration .I've been poorly for awhile but over the last month it's the best I've felt for a long time .they have told me it's in operable but your story has raised my hopes .God bless you Stay safe .Poppy Storey x

[poppystorey]

Hi I was diagnosed a year ago with nuero endocrine tumour ,it is slow growing I'm treated with somatuline injection every 28 days and take creon before everything I eat .,it has shrunk by 50% since start of treatment, I am 77 and leading a fairly normal life but I do have other health issues.i wish you all the very best for the future .RegardsPoppy

[Lottieonline in reply to poppystorey]

Hello Poppy,How are you feeling now?

I’ve not heard of your type of tumour. Mine was diagnosed in A&E in April and everything seems to take weeks to see someone, weeks to have a biopsy, then for results, weeks to see a consultant.

Then I wait now to see the Chemo nurse and eventually a months time I will start chemo every week for 3 weeks, with one week off.

Not scared, or worried about losing my hair, just terrified of dying.

Where do we go, will I ever see my parents again?

Will I hold my beautiful daughter again?

How will I know it’s my time….

You sound so strong it’s great to read your blog.

Much kindness to you.

From Lottieonline