topic Re: Pancreatic Cancer - Our Journey has just begun in Diagnosis and treatment

Pancreatic Cancer - Our Journey has just begun

me_mum — Sat, 26 Nov 2016 16:48:03 GMT

Here is our story, mum was diagnosed in October this year 2016. Within one month she was developing Jaundice and had back pain, nausea and was not eating well. She was set to have a Whipple procedure last friday but they saw that the tumour had grown more than 4cm from when she had her last scan. So they did two bypasses one to fix the jaundice and one to assist with digestion. She just arrived back home two days ago and is still abit nauseated and has troubles eating (my guess is she is still recovering from the operation).

The doctors have advised she do strong Chemotherapy (i am not sure what this involves yet), to shrink the tumour to then be able to complete the Whipple procedure Feb 2017. My worry is will the tumour spread before she starts chemo which is a month away.

Any advice would be great.

I am happy to also provide support and share my knowledge of what we have experienced with anyone going through the same diagnosis.

Re: Pancreatic Cancer - Our Journey has just begun

kj — Sun, 27 Nov 2016 01:09:29 GMT

It reads like at the present your mum Is not medically well enough to start a vigorous and strong chemotherapy to try and shrink the tumour so a whipple can proceed,I would be asking for as much information about the proposed treatments from her medicos,,unfortunately options are limited at this time.

Everyone responds differently to treatments good luck.

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Sun, 27 Nov 2016 06:31:24 GMT

So are you saying that mum should not be feeling nausea and not wanting to eat just after her operation? We are booked in to see the specialist on tuesday so we'll explain all this to him then.

Thanks

Re: Pancreatic Cancer - Our Journey has just begun

kj — Sun, 27 Nov 2016 07:52:33 GMT

Nausea,and not wanting to eat are symptoms of Pancreatic Cancer ,her body would be still be recovering from surgery as well ,after my whipple it was weeks before I could eat,I could not remember all my questions to the docs so I wrote it all down,even though I had no appetite during chemo I would try a small serve of scrambled eggs on toast they told me to eat whatever I could keep down.it is trial and error.Good that you are seeing the specialist Tuesday.

Re: Pancreatic Cancer - Our Journey has just begun

nifty — Sun, 27 Nov 2016 09:59:10 GMT

Seek a second opinion. Many surgeons are doing the whipple operation and most have had little experience, rule one, ask them what their rate is per year, must be at least 40, ask what the outcomes are, do they have a back up team.

I do not know you position but if you are in Melbourne, then there are excellent surgeons. We used Dr Charles Pilgrim (Victorian Heoato Pancreato Billiary Surgery Group) who is outstanding, works out of Cabrini Hospital.

Do not delay, seek other options, push hard till you get a result, a result to make you feel comfortable, just get out there and work until you make it happen. Nifty.

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Sun, 27 Nov 2016 20:21:19 GMT

Thanks everyone, i am onto it today 😉 but first i have to try and get mum to eat something...

Does anyone have any suggestions for types of food she can eat at this time?

Re: Pancreatic Cancer - Our Journey has just begun

kj — Sun, 27 Nov 2016 21:59:13 GMT

Try some hospital sustagen drink with a blended banana and milk or just mixed with plain water

I found it nourishing.

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Tue, 29 Nov 2016 03:39:44 GMT

Mum is now taking Ondansetron which seems to have helped she has stopped vomiting and is starting to eat abit more now.

The specialist has advised that she needs to eat normally before she can start chemo, the recovery from a partial whipple is from 4-6weeks.

So next is another lot of blood tests and re-CT Scan...

Re: Pancreatic Cancer - Our Journey has just begun

kj — Tue, 29 Nov 2016 03:51:23 GMT

That is good about the ondansetron helping ,sorry I assumed your mum was already on anti nausea meds.Hopefully eating will quicken her recovery before chemo is started.

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Mon, 12 Dec 2016 02:40:09 GMT

Just got mum's results of her CTScan post bypass surgery, the tumour has grown from 4.2 to 4.5cm and another small one is now growing next to it at roughly 1.7cm, both tumours are still intact and are not affecting other organs... mum should be starting chemo Jan 2017.

Is 4.5cm big for this kind of cancer? what about now having another one grow next to it?

PS: Mum is still having issues keeping her food down as well...

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Sun, 08 Jan 2017 22:45:34 GMT

Mum starts her chemo next Monday for about 3 months (once a week) in the hope that the tumour will shrink and then a whipple operation can start again...

Any advice or tips for the first day?

Re: Pancreatic Cancer - Our Journey has just begun

kj — Mon, 09 Jan 2017 03:53:23 GMT

Drink plenty of water after chemo helps flush toxins from body quicker also every one has a different tolerance.best wishes to your Mum with treatment.

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Mon, 09 Jan 2017 03:57:04 GMT

thanks kj

Re: Pancreatic Cancer - Our Journey has just begun

Gab_CCNSW — Fri, 03 Feb 2017 00:51:13 GMT

Hi @me_mum

Just checking in with how things are going for your mum.

Plus I thought I'd let you know that Cancer Council runs a telephone group for people with pancreatic cancer - perhaps your mum might find it helpful to talk with others who've had the same diagnosis and treatment. If you wanted to find out more, best to call 1300 755 632 or email: tsg@nswcc.org.au.

There's an opportunity coming up at Cancer Council for carers to share their experiences so that we can engage with other carers who feel isolated. Let us know if you're interested - or anyone else who's reading this post. Email us at: onlinecommunity@nswcc.org.au

Regards

@Gab_CCNSW

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Fri, 03 Feb 2017 13:01:49 GMT

Mum finished her first cycle this week, so next week she will be having a break. She has been ok but coping with odd pains here and there. Eating is the main issue, she now weights 47kgs and has started to loose her hair. She has two more cycles to complete before they will rescan to see if the tumour has shrunk. Before she started chemo she had a upper chest scan and they did find some spots on her lungs but they are not sure if they are cancerous or not. Her oncologist did tell her yesterday that if the spots are cancerous then they will not operate. To be honest all the doctors we have dealt with need lessons in how to speak to patients, I've found they don't even try to put a postive spin on anything they say, and this is what I am having to do so mum can keep fighting. I am not sure what happens if they tell us they can't operate, I guess it's a decision then mum will have to make if she decides not to continue chemo or not?

Does anyone know how a body shuts down if a cancer patient stops chemo, do they suffer?

Is 47kgs very low for a patient who still has two more cycles to complete?

Thanks Mon

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Fri, 03 Feb 2017 13:03:09 GMT

Does anyone know how a body shuts down if a cancer patient stops chemo, do they suffer?

Is 47kgs very low for a patient who still has two more cycles to complete?

Thanks Mon

Re: Pancreatic Cancer - Our Journey has just begun

me_mum — Tue, 14 Feb 2017 03:11:35 GMT

Update:

It was mum's bday yesterday and the start of her second cycle of treatment... So far she is going ok, the odd pains but not too bad. She has three cycles then we will know her fate after the third cycle (after re-doing CT Scans).

She has lost all her hair now and is still fighting with food, having only Ensure drinks at night and during the day whatever she can keep down.

Both dad and myself are doing everything we can to keep her thinking positive and to stay strong ;).

I haven't found anyone who has had a similar experience to what mum has gone through, not too sure if mum is a unquie case...