A forum for family, friends and carers of pancreatic cancer patients

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Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: Concerned husband

Postby Veema » Tue Jan 30, 2018 6:31 pm

I don't know if I mentioned this earlier and it might be a load of tosh, but our chemo nurses recommended napolina plum tomatoes to boost neutrophils...only napolina though...my husband had these and his neutrophils were never too low...like I say, could be rubbish (maybe the nurse had shares in napolina or something), but might be worth a shot.

Vx

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Wed Jan 31, 2018 9:53 am

Hello Saxon,

Sorry to hear that your wife is now anaemic.

Again, this is not uncommon in chemo - and depending on how low her haemoglobin levels actually are, they might plan to give her a blood transfusion.

In the case of folfirinox, the chemo doesn't have to be withed before the transfusion - as long as she has it sometime within that window, and is not waiting too long for a transfusion, if that is what is recommended.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Thu Mar 08, 2018 12:10 pm

Hello,

My wife is still going through her chemo - she had her 4th dose a week and a half ago, but is still struggling with anaemia - all I see of her in the evening is a pale shadow of herself lying asleep on the sofa with the TV on.

She has another chemo session early next week and they were speaking of a blood transfusion if things don't improve. I understand from a previous response that this is something that they can do easily enough, but I was wondering what the procedure involves - is it just squeezing some blood in at the same time as the chemo, or will be a separate visit for an hour or two on another day or a longer spell in hospital.

I'm supposed to be away for a few days and I need to have a plan in place for organising this in case she needs the transfusion (hopefully not).

PCUK Nurse Dianne
Posts: 268
Joined: Tue Aug 14, 2012 2:29 pm

Re: Concerned husband

Postby PCUK Nurse Dianne » Fri Mar 09, 2018 12:28 pm

Good morning Saxon,
Thank you for your post and asking about the blood transfusion. Blood transfusions are usually given over a period of ~ 2 hours for one 'unit (bag of ~ 250-300mls) of blood' to be tranfused. It will depend on your wife's level of anaemia, as to how many units of bloods she may require. It might be worth you contacting the oncology centre where she has her chemotherapy and ask what the plan might be.

Oncology centres may differ in how they will give blood transfusions. Some may prefer not to give it the same day as the chemotherapy and may suggest coming back on another day. The blood transfusion cannot be given through the same intravenous access (so cannula or IV line) as the chemotherapy, so this might be another consideration.

If you speak to one of the nurses in the Chemotherapy Unit and explain that you will be away for a few days, they may be able to work around this for both you and your wife. Worth giving them a call and asking what their normal policy is.

I hope this is helpful.

Kind regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support phone line: 0808 801 0707
email: nurse@pancreaticcancer.org.uk

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Mon Mar 12, 2018 1:26 pm

Dianne,

Excellent advice thanks.

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Concerned husband

Postby Justamo » Fri Mar 16, 2018 9:07 am

Hello Saxon.
How has Mrs Saxon been feeling this week ?
Best wishes
Mo

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Wed Mar 28, 2018 8:45 am

Mrs Saxon has just had her 6th chemo treatment and a planned CAT scan.

After some further blood tests, it transpires that the fatigue is more likely to be as a result of reactions to the chemo drugs than anaemia - she is still anaemic and has low platelets, but these haemoglobin levels have improved slightly over the period. So no more worries about blood transfusions, but still suffering from side effects form the chemo that are progressively getting worse - fatigue, sickness, ulcers, hair loss, sores etc.

She will not get the results from the CAT scan for a couple of weeks, but they seem to be preparing us for bad news. We knew that the pancreatic tumour markers in mid December were around 24,000, but were told yesterday that these increased to 140,000 by mid Jan when the chemo started. They are now around 110,000, which is obviously good as they are going down, but are still very high. they have also said that the tumours may not have shrunk by much.

It's going to be a hard 2 weeks what with waiting for the results and having all the side effects.

Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: Concerned husband

Postby Veema » Wed Mar 28, 2018 8:51 am

Waiting for scan results is always an anxious time, but even if the tumours haven't shrunk any, if they haven't grown any that's positive...sometimes stable disease is all we can ask for.

Good luck and fingers crossed.

Vx

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Thu Apr 12, 2018 4:34 pm

Got the scan results on Monday. The tumours have grown quite a lot and the radiologists view is that the chemo is doing nothing. They're recommending a change to another chemo drug. All very numb at the moment.
Are the other drugs as effective, or is it a case of you can be lucky and have one that doesn't work and the next one that does?

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Tue Apr 17, 2018 4:06 pm

Hello Saxon,

Apologies for the late response.

Do you know the name of the chemotherapy drugs at all?

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Tue Apr 24, 2018 1:57 pm

Update.

Sticking with the folfirinox and she will be having another scan after the next treatment. Her normal consultant agrees that as the symptoms are reducing and tumour markers coming down, it must be working.

Everyone is excited as genetic tests have shown that she has the BRC A genetic mutation and it is thought that this caused her breast cancer 10 years ago and the current PC. Apparently there are other treatments that might be effective, but we would have to fund these at £4K a month.

Would this be immunotherapy - I couldn't make the appointment as tied up at work?

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Concerned husband

Postby Justamo » Wed Apr 25, 2018 7:38 am

Was this appointment very unexpected Saxon ? Shame you couldn't get away from work to attend it.
Mo.

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Wed Apr 25, 2018 3:41 pm

Hello Saxon,

That's good news to hear that your wife is to carry on with the folfirinox. It seems sensible to carry on if she is clinically improving and that the tumour markers are reducing - it indicates there is a response, which is good.

Not sure what the drugs might be - do you have a name at all Saxon?

If not, don't worry, maybe your can ask at the next appointment, or if you are unable to make it, you could get your wife to ask about them, and get the name written down? Might they be available on a clinical trial at all perhaps?

Kind regards,
Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Thu Apr 26, 2018 2:58 pm

Jeni,

Thanks, will ask at next appointment.

The consultant did say that it's not currently part of a clinical trial.

Saxon
Posts: 19
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Wed May 09, 2018 8:57 am

My wife had her latest treatment yesterday. Just had a nurse led consultation. She is now having to have an anti histamine drip as having allergic reactions to the chemo, but it all went well.

The plan is for a scan next week to see what the treatment is doing. All things going well, she is being put forward for a PARP inhibitor. Apparently the specific drug is new and only being tested in the USA.

Does this sound right?

She also has to complete another 3 chemo cycles and be shown to have the chemo working as I understand things.

Saxon