My mum - Stage 4 PC with liver mets

[toodotty]

Hi Dee123,

Try your mum on Milk Thistle, this can diminish some of the side effects. I also am more nauseous around chemo time and need to stay away from any diary products at all for at least a week. This time I felt sick before I even started chemo, what is that all about? Herbal tea such as camomile or lemon & ginger can also just calm the stomach down a bit. Erika.

[J9pkr]

Thank you for your ideas, it is greatly appreciated. I will certainly try the Milk Thistle. Just hoping that she can get over the virus so we know what is side effects of the chemo and try and deal with those.

J x

[toodotty]

Hi J9pkr,

It will get easier, make sure you keep a diary of symptoms at the start, your mum will quickly learn about her good days and not so good days. Also things will change a bit which each cycle, generally for the better. I do find that having chemo is sometimes a bit like the early stages of pregnancy and I do suffer the "morning sickness" feeling some of the time but my biggest issue is the sudden onset of cravings. Thankfully food items rather than coal; for instance, I have found cherries, black or red grapes absolutely essential for breakfast, it just kick starts my day and I don't need Creon for it.

Erika

[J9pkr]

Hi Erika,

Thanks for your kind words. I hope it gets better, she is still so poorly with the virus. I hope that like you she finds some food that she fancies as she is really struggling at the moment. Just hoping she will be well enough to continue with her chemo. Best of luck with your treatment.

J x

[Dandygal76]

I am on catch up... Dee, has your mum got onto Emend yet? Also, if your mum is 'thinking' sickness then speak to the nurses. We had a big problem with dad called 'anticipatory sickness'.. he just associated a situation in his head and was very nausea's or sick. It is very well documented and you should explore it because there are easy solutions to it that are not anti sickness tablets.When the PCUK nurses recognised this and suggested alternative treatment it changed dad's wellbeing massively so give them a call. x

[J9pkr]

Mum is finally over the virus after a brief stay in hospital. We are back on the chemo, dose 2 last week and dose 3 booked for Thursday. She is still battling the nausea which is making her feel weak. She is still eating every meal which is a struggle when she feels so sick. Just hoping for the nausea to lift as she felt really good prior to the chemo last week and was not nauseous at all. Hope all your treatments and loved ones are doing well.

J x

[Samsavan]

Hi Dee

Just wondering how your mum is doing?? I find my self in the same predicament as you. My mum starts chemo on the 21/12.

I hope you mum is well and fighting strong .

Sam x

[Dee123]

Dandygal76 wrote:

> I am on catch up... Dee, has your mum got onto Emend yet? Also, if your

> mum is 'thinking' sickness then speak to the nurses. We had a big problem

> with dad called 'anticipatory sickness'.. he just associated a situation in

> his head and was very nausea's or sick. It is very well documented and you

> should explore it because there are easy solutions to it that are not anti

> sickness tablets.When the PCUK nurses recognised this and suggested

> alternative treatment it changed dad's wellbeing massively so give them a

> call. x

Hi DG, no she hasn't tried Emend yet. We got something stronger and it's ok at the moment so we will save Emend until we need it. It sounds good. She definitely has anticipatory sickness so I will be interested to find out about the alternative treatment and will ask! Thanks x

[Dee123]

J9pkr wrote:

> Mum is finally over the virus after a brief stay in hospital. We are back

> on the chemo, dose 2 last week and dose 3 booked for Thursday. She is still

> battling the nausea which is making her feel weak. She is still eating

> every meal which is a struggle when she feels so sick. Just hoping for the

> nausea to lift as she felt really good prior to the chemo last week and was

> not nauseous at all. Hope all your treatments and loved ones are doing

> well.

> J x

Hi J, that's good your mum got over the virus. How is she doing now? Have you found stronger anti sickness medicine? Hopefully she can find one that works for her!x

[Dee123]

Samsavan wrote:

> Hi Dee

>

> Just wondering how your mum is doing?? I find my self in the same

> predicament as you. My mum starts chemo on the 21/12.

> I hope you mum is well and fighting strong .

>

> Sam x

Hi Sam, my mum is doing ok so far. She has chemo again this Thursday and then a 2 week break for Christmas which will be nice. Then 3 more weeks of Chemo and a scan at the end of January. We are hoping the scan goes well and then she could potentially get a longer break from chemo. She does have a worrying symptom of tightness around/under her ribs but we are hoping this is just a symptom of chemo. I hope your mum is doing ok and the chemo works well for her!x

[kate2101]

Hi Sam and Dee

Hope both your mums are doing well. I’m sorry you are going through this, it must be very hard for you. I have three children, my daughter still lives at home and I hate watching her deal with this. I’m lucky that I’m still relatively well and don’t need much help but this illness changes everyone’s lives, not just the patients.

I was interested that Dee’s mum gets a tightness under her ribs.... i do too. I have told my oncologist who hasn’t really given me an explanation, slightly complicated as I hurt my back a few months ago and they seem to put it down to that but I don’t think it is. It seems to be worse when I am on my feet.

Hope you and your families have a good Christmas, the best we can under the circumstances.

Kate x

[Samsavan]

Kate,

Thinking of you and sending you good vibes and virtual hugs!! Stay strong and know you aren’t alone xxxx

[kate2101]

Thanks for support and good wishes.

I’m sitting at the hospital waiting to see my oncologist and wondering if he has the results of my CT scan, scary! Number 10 chemo tomorrow. Another scary happening..... I booked my flight this week to follow Erika for treatment in America leaving here 8 January! Because of my diagnosis my life insurance has paid out so I’m very lucky to be able to pay for it. No magic cure but at least they talk in years rather than months. Watch this space! x

[Samsavan]

kate2101 wrote:

> Thanks for support and good wishes.

> I’m sitting at the hospital waiting to see my oncologist and wondering if

> he has the results of my CT scan, scary! Number 10 chemo tomorrow. Another

> scary happening..... I booked my flight this week to follow Erika for

> treatment in America leaving here 8 January! Because of my diagnosis my

> life insurance has paid out so I’m very lucky to be able to pay for it. No

> magic cure but at least they talk in years rather than months. Watch this

> space! x

Kate , look I just realised I can reply to your post .... with that nifty inverted commas .....

fantastic that your are going to get more promising treatment ..... Godspeed Kate ..

Please keep us posted ..... I m hoping you will get some promising news from oncologist xxxx

[KeithKerry]

Good luck Kate and Erika

I will watch for replies with great interest as I will be asking questions of our Oncolgist regarding Nanoknife myself on Monday.

[Samsavan]

KeithKerry wrote:

> Good like Kate and Erika

>

> I will watch for replies with great interest as I will be asking questions

> of our Oncolgist regarding Nanoknife myself on Monday.

Keith

Nanoknife is never even mentioned to us .

Dare I ask the oncologist ?? It asked him about having milk thistle as a supplement and that was shut down with a stern no.

Sam

[Dee123]

Good luck Kate with your treatment! Looking forward to hearing about it!

My mum had her usual blood test before chemo today and they said that her tumour markers are the lowest they have been since we started this journey in July 2018, so that must be good news!

I hope everyone is doing ok. I am thinking of you all and everyone reading this xx

[kate2101]

Good news Dee about your mums tumour markers, really pleased for you. I think a good day for me. I was hoping for CT scan results but not filtered through yet. My bloods were good, tumour marker dropped a bit more, started at 500,000 (yes!) 148 today. Liver function improved (must be because I’ve cut out my daily bottle of gin ). Only issue is low platelets again. Consequently, tomorrow’s chemo off again, postponed for the second time. No clinic next week and as I have to have 2+ weeks chemo free before Nanoknife my next chemo won’t be until I come home.

I’m very lucky that my oncologist is fully supportive of my decision to go abroad and will be there to carry on with whatever treatment I need afterwards. I asked him if he thought I was mad spending all that money and going so far but although he pointed out the risks re infection, DVT etc his reply was an emphatic ‘no’. I’m scared stiff but trying to treat it as an adventure!

To be honest, I’m fed up with all this cancer business, I just want to stop now and go back to being me, go back to work and a normal life, I didn’t sign up for this!

[Samsavan]

kate2101 wrote:

> Good news Dee about your mums tumour markers, really pleased for you. I

> think a good day for me. I was hoping for CT scan results but not filtered

> through yet. My bloods were good, tumour marker dropped a bit more, started

> at 500,000 (yes!) 148 today. Liver function improved (must be because I’ve

> cut out my daily bottle of gin ). Only issue is low platelets again.

> Consequently, tomorrow’s chemo off again, postponed for the second time. No

> clinic next week and as I have to have 2+ weeks chemo free before Nanoknife

> my next chemo won’t be until I come home.

>

> I’m very lucky that my oncologist is fully supportive of my decision to go

> abroad and will be there to carry on with whatever treatment I need

> afterwards. I asked him if he thought I was mad spending all that money and

> going so far but although he pointed out the risks re infection, DVT etc

> his reply was an emphatic ‘no’. I’m scared stiff but trying to treat it as

> an adventure!

>

> To be honest, I’m fed up with all this cancer business, I just want to stop

> now and go back to being me, go back to work and a normal life, I didn’t

> sign up for this!

Kate

I don’t think I can say anything to comfert you. All I can say is , from all over here in Australia I m thinking of you .... I m in awe of all your courage and your good humor still.

Reading your messages gives me hope !!! It’s so so so so shit that anyone has to go through this ( carers included ) .

Chin up girl .... Atleast you have great medical team supporting your decision .

May the universe give you strength to fight the best fight !

500,000 !!!!!! Oh my god, you have done well to bring it to triple digits.

Sending you strength and love

Sam xx

[PCUK Nurse Dianne]

Kate,

Wishing you strength and safe travel, along with Erika, you are paving the way for many other patients in making such epic trips. We are all thinking of you and hope that you and Erika will be able to update us on this journey when you feel able.

All best wishes, safe journey.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support Line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[kate2101]

Hi Dianne,

Thanks for your good wishes, who would have thought a year ago I’d be in this position, I didn’t appreciate how simple life was. Looking forward to my trip but also scared stiff! Like Erika, I’m fortunate that my life insurance paid out so I can pay for the treatment without remortgaging or robbing the bank.

It’s been a strange year since my diagnosis in June, a rocky rollercoaster but it’s ending better than I expected. I’m still here, tired but still functioning as normal and looking forward to cooking for my family for Christmas. And of course America in January! I know nanoknife is no magic cure and there are risks but what to lose?

Best wishes to all for Christmas, let’s hope 2019 brings good news and progress for PC sufferers. X

[Theresa Upton]

Good luck Kate, I wish you all the luck in the world and a safe journey.

Enjoy your Christmas break

Theresa

xx

[kate2101]

Thanks very much Theresa. Must admit I’m a mixture of emotions, excited, hopeful, mainly scared but what an adventure! But one I wish I wasn’t involved in. I now have to concentrate on getting as fit as possible and avoid any nasty bugs going around.

Thanks again for good wishes, I’ll keep you posted. Enjoy your Christmas too. X

[J9pkr]

Hi All,

It has been a while since I have written anything here but have been reading your blogs with interest and hope everyone is doing well.

My Mum is not doing too badly we are on the last dose of chemo on the first cycle and will have a CT next Tuesday which will no doubt bring anxiety until we receive the results. Everything is crossed that the the chemo is doing something positive which I know will spur Mum on. Mum is on Gemcitabine and Abraxane and after this dose has experienced a really strong metallic taste along with the usual nausea. Has anyone any experience of this and any suggestions to relieve this side effect?

Best wishes to all. J

[Dee123]

Hi all,

Just a quick update on my Mum's CT scan results today after the end of her Gemcitabine and Abraxane chemotherapy.

The pancreas tumour and liver mets have not changed since they reduced in the last scan, so this is good news.

However her lymph nodes have now been mentioned for the first time.

The lymph node in her abdomen has increased in size from 5cm to 16cm. This might explain the pressure/tightness pains she has been feeling in/around her stomach recently.

The next step is to have another scan in 4 weeks to check if the lymph node has increased in size again, if it has she will then move on to Folfirinox chemotherapy. I know this is a more aggressive chemotherapy and she did not want this originally but they have said they can adjust the dosage to what works for her.

If anyone has any tips on how to reduce the swelling of the lymph nodes, any diet tips, or anything else that would be great! I am going to start my research online now to look into lymph node involvement because this is new...

I hope everyone is doing ok xx