Whipple operation halted

[hughstjust]

My wife Joan has been ill since February when a scan revealed that she had a stone in her bile duct. She proceeded to have an ERCP in March; another in June - both failed due to her jaundice with stents placed in the bile duct. Finally, following a CT scan, on 29 June, a 'mass' was identified on her pancreas and we were told on 4 July that it was likely she had pancreatic cancer.

At this point we switched to insurance and Joan had an EUS and biopsy at Maidstone where we were advised that she had an early, well defined operable tumour. We went privately to xx Hospital and on Sunday 11 August a 'Whipple' operation was attempted unsuccessfully as there was a 'spot' on her liver. The surgeon did however take out her gall bladder and complete a double bi-pass.

Now we wait a referral to our local cancer unit from xx where Joan will be given chemotherapy.

Joan had leukaemia in 1993/94 so has already been through chemotherapy and ultimately a bone marrow transplant - at xx!

Not sure where we go from here - have heard that chemotherapy is not always successful.

[PCUK Nurse Dianne]

Good morning Hughstjust,

Thanks for your post on the forum and welcome. Sorry for your sad news, and as we have discussed the most important thing is for Joan to recover from the surgery, try and gain some weight and become mobile again in readiness for chemotherapy. I am happy to email you independently of the forum or speak again if you wish, and of course it will be good to have some ideas of other members of the forum family, to hear what their experiences are as well.

There have been instances where people have had a bypass done and had chemotherapy with the offering of surgery to remove the tumour when it has been responsive to the chemotherapy. As Joan has previously had a good response to her leukaemia chemotherapy, this is good that she was able to tolerate that. There are various treatment options, and I am sure that your Oncologist should discuss all these with you, and we can give you further information also. The normal pathway would be to commence chemotherapy and then repeat CT scan in 2-3 months to assess the response of the chemotherapy.

Feel free to phone or we can email for further information, and I am sure some helpful and encouraging comments from your 'forum family' will be helpful too.

REgards,

Dianne

Support Team.

[hughstjust]

We saw the oncologist yesterday prior to starting chemotherapy using Gem and abraxane however to our surprise, he halted the start of the treatment as he wanted to see the liver biopsy taken during Joan's failed whipple. Apparently the latest CT scan taken some 2 weeks ago showed no change from that taken on 29 June. Additionally, a critical blood marker was not elevated. Joan has thus far had no pain - apart from the operation.

All this adds up to him believing Joan may have a slow growing endocrine tumour and that the liver may not be compromised.

Joan is somewhat in shock at all this.

Iain

[J_T]

Hi Iain and welcome to the forum.

Sorry to hear of Joan's diagnosis. I have no experience of whipple but just wanted to say hello and to say make good use of the forum, it's useful in many ways. Good for advice, info and generally sounding off!

Good luck with Joan's treatment.

Julia

[hughstjust]

UPDATE

Joan is now on the 2nd cycle of a course of gemcitabine and abraxane which she is receiving at our local private hospital. This appears to be going fairly well althought she is very tired at the slightest exertion and is pretty 'woozey' for part of the time. Joan's weight loss is pretty alarming too as she is nearly down to 7 stone now. We are with the local hospice team and Joan is receiving aromatherapy weekly - all in all she is in good spirits despite all this - we are just back from 3 nights in Amsterdam!

[PCUK Nurse Jeni]

Hi Hugh,

Many thanks for sharing the update on Joan's treatment.

May I ask, is Joan taking any pancreatic enzyme supplements, such as creon, nutrisym, etc....

Jeni.

[J_T]

Glad to hear you managed a break in Amsterdam Joan appears to be a strong lady so good luck with the treatment. Our PCT refused to let us pay for Abraxane, I suppose because we wanted the gem via NHS

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[Cathy]

Hi Hugh

I've just bought some Fortisip for my partner, Jonathan. A very small bottle packs about 300 calls. He isn't underweight at all but can't eat much at the mo due to tummy problems so is losing weight and I thought this would help (recommended by forum friend Bee). Tastes quite nice apparently.

You may be able to get a prescription if you ask your GP, it's quite expensive paying over the counter.

Julia - I can't imagine how frustrating that was for you... I remember you saying at the time....

Take care

Cathy xx

[J_T]

Can't you get it on prescription Cathy?! We had a cupboard full of it xxx

[Bee]

Hi,

Just re fortisip drinks etc. we have that on prescription, they come in juice or milkshake variety . We initially saw the dietician who put chris down to receive some free samples. We had two boxes delivered within two days, from fortisip and fresubin. He tried them all and then went to gp and got the specific flavours he liked on prescription, have had no problem getting them. Hope this helps!

Bee xx

[Cathy]

J_T wrote:

> Can't you get it on prescription Cathy?! We had a cupboard full of it xxx

Hi Julia

Probably. He's off to the GP later this week anyway so I'll get him to ask. Thought it would be worth us getting some to try as the chemist (tesco pharmacy actually) said they could order some. If I lived a bit closer to you I could have nipped over and emptied your cupboard

Bee, thank you.. I hadn't thought of that. Jonathan doesn't see the dietician offered to him but I can ask his nurse on Monday for some help.

xxxx

[Slewis7313]

Iain, could I ask what became of the comment on 3rd October regarding the possibility of the cancer being endocrine? I had a very similar conversation with the Oncologist in Heidelberg as my tumour had been stable for 5 months with no treatment at all. They looked at 2 markers which might point in this direction and they were indeed elevated. I have had 2 biopsies, both of which actually showed no conclusive cancerous cells. Whilst not a reliable indication of endocrine cancer, Heidelberg were adamant that the marker results warrant further investigation and suggested PET scan which I hope to arrange at my next oncologist meeting.

I hope things are otherwise going well for Joan.

Take care

Steve

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