Concerned husband

[Saxon]

After a year of suffering from stomach pains, taking numerous pills that didn’t seem to have any impact, an endoscopy that found nothing wrong in August, last year my wife had an ultrasound at the beginning of December. She was called back the same day to the surgery for a blood test, as they had found shadows on her liver and they booked her in for a CT scan the following Wednesday.

That weekend she had swelling in her leg and it became painful to the touch. She went to the doctors on the Monday for her leg and was told that she had phlebitis and was told at the same time that she has elevated cancer markers in her blood for bowel, breast and pancreatic cancer.

On the Wednesday she had the CT scan and on that Friday she was called in to the doctors and told that she did have pancreatic cancer. The following Wednesday we were told that it is likely that the shadows on the liver are secondary cancer and as such they cannot cure her of cancer, merely treat it. She also had a scan on her leg and was advised that she had numerous thrombosis in her leg and not phlebitis.

A liver biopsy has since confirmed that the liver tumours are secondary and she is due to start chemo tomorrow.

Since December her health has taken a massive downturn. Over Christmas she contracted numerous bugs and was ill. With the leg thrombosis, she spent much of the time resting on the sofa with her leg up coughing. She also started being sick and this has continued most mornings. The stomach pain has returned and worsened – taking constant paracetamol makes no difference; and she gets exceptionally tired by the slightest thing – someone came round to cut her hair and she then spent the next 3 hours asleep in bed.

She isn’t sleeping well, despite sleeping tablets. The coughing, nausea and pain keep waking her up.

I’m somewhat at a loss.

Are all these the physical symptoms of the pancreatic cancer? I keep telling her that it’s just the stress and worry and not sleeping well makes everything seem worse. She had breast cancer 10 years ago and the effects of the chemo then wore her out. Is it the same with FOLFIRINOX, which is the drug she is going to be given?

[Veebee]

Hello Saxon and I'm sorry that your wife is so poorly. I can't give advise on Folfirinox but others on the forum will be able to talk to you about that. However, my husband was referred to Macmillan as soon as he was diagnosed and the nurse was very good at managing his pain. Oromorph and, at a later date, MST slow release tablets too. He also had creon for digestion. Your GP should also be very much involved.

Vee x

[patrigib]

My husvand tolerated folfirinox relatively well. Pain, upset stomach and being tired is part of the desease. She may feel better after a few rounds of chemo. Pancreatic cancer has ups and downs. Hope she will tolerate the chemo.

Ask for stronger painmedication. People shouldn't experience pain.

[Veema]

Folfirinox is a chemo that she'll either tolerate well or not and you wont know that until she gives it a go...my husband tolerated it very well and had a good quality of life.

On a practical level, you need a referral to palliative care...they will help with lots of things, pain medication being one of them. She will also be entitled to either PIP or attendance allowance dependent on her age. She should also have been given creon to take with food to help digestion.

Vx

[PCUK Nurse Rachel C]

Dear Saxon,

Welcome to the forum, and I am sorry to hear of your wife's recent diagnosis and poor health. I am sure you have already found that this is a very supportive place to be and please do continue to use the support of others here on the forum.

As other forum members have mentioned, it does sounds as if your wife would benefit from a referral to a Palliative Care Nurse (or Team) for some pain control advise.I hope you don't mind but I will email you separately.

With Kind regards,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

Thanks for the responses. Had the first chemo session yesterday and is currently coping apart from not sleeping. We got co-codamol for pain relief yesterday too and creon last week. Both seem to be working well.

She really perks up when not in pain. Hope it lasts!

[Veema]

Pain is something that my husband just never had...so it's hard to comment on that. I do find it hard to believe that with the plethora of pain medication available that anyone has to suffer...I suppose it's just about getting the right meds at the right dose. If she continues to be in pain, you must tell someone so they can review it.

Pleased the chemo went well...keep an eye on the tingly fingers and toes (peripheral neuropathy) as that can get quite painful. We were also told that napolina tomatoes really help to keep neutrofils up at the right levels...not just any tinned tomatoes...has to be napolina. Hope she continues to tolerate it well.

Vx

[Saxon]

Thanks for all your previous words of advice, but can I ask another question?

My wife had her first chemo session last Tuesday and on the day and following 3 days she seemed to have very few symptoms. I know that chemo isn’t a miracle cure, but was thinking perhaps she’d just been having a bad spell in the run up to the chemo session. However, on Friday pm, Saturday and Sunday, all the symptoms have come back as bad as before.

I’m just confused. Is this what is to be expected? She had had very few side effects from the chemo at the time, so is this just the affects of the illness returning or the chemo side effects now starting?

[PCUK Nurse Rachel C]

Dear Saxon,

I am sorry hear that your wife's symptoms are worse again, a few days after having chemo. I suspect that your wife's symptoms might have improved initially as she was having a drug called dexamethasone as part of her chemotherapy anti-sickness regime?

Dexamethasone belongs to the steroid family and is commonly used in chemotherapy regimes and is given for 2-3 days after chemo. It not only helps with controlling nausea and vomiting but also gives people more of an appetite, more energy and can induce a feeling of well-being.

Some people's symptoms do improve when they are on dexamethasone and then can come back again when it is stopped, unfortunately. Saxon, if you are concerned about your wife's symptoms, please do not hesitate to touch base with us at: nurse@pancreaticcancer.org.uk

Saxon, the chemotherapy unit should also have given you a 24 hour contact number and advised you as to when to touch base with them, so please do not hesitate to touch base with them, if you have any concerns either.

With kindest regards,

Rachel. C.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

Thanks Rachel.

My wife's been in contact, but doesn't always share with me.

A nurse did say that she might dip a few days after the chemo when she came to remove the pump 48 hours after the main session. In my mind this was going to be a temporary blip, not something ongoing.

[Saxon]

Just coming up for the second round of chemo treatment.

The blood tests have shown some low levels of something technical. They were sceptical whether to proceed with the chemo, but are going to go ahead, but my wife will now need to inject herself for the first 5 days with something to boost her immune.

Is this normal, or just due to the low white blood cell count?

[Veema]

Not sure exactly what you are referring to...there are many different things that they check in the blood before chemo goes ahead...my husband sometimes had low potassium or calcium, and sometimes his neutrophils were a bit low, but he never had to inject himself...

Hope her bloods are ok for the next lot.

Vx

[sandraW]

Saxon, sorry you find yourself here, but hopefully we can all help with the roller coaster ride you find yourselves on.

My husband, Trevor had 12 rounds of chemo in his first session, 6 x 5FU then 6 Folfirinox, his bloods were fine. After a 6 month break he started treatment again and on the second lot of Folfirinox, his neutrophils were so low, so he couldn't have his chemo, and like your wife had to inject himself, every day, for 5 days. After that his bloods were fine and he had another 9 treatments.

Reading peoples stories on here it seems to happen to quite a lot of people. We were told to expect Trevor to experience some pain in his thighs, which he did, but it wasn't too bad.

I hope your wife has no further problems, take care sandrax

[PCUK Nurse Jeni]

Hello Saxon,

Sorry to hear that your wife has had some issues with chemo.

As Sandra has eluded to above, it certainly sounds like this is a case of a low neutrophil count. The neutrophils are a component of the white blood cell count, and it is their job to fight infection - in other words, giving us our immunity to certain infections etc...

When these drop, your body can become susceptible to infections, and therefore, there is a greater risk of these infection causing problems, as there is no "natural" defence mechanism, so to speak, because the chemo has reduced it.

Its quite common in chemotherapy in general, but in a regime like folfirinox, its especially problematic.

The injections she will be giving herself will boost her bone marrow to produce these cells at a rate which will hopefully mean a normal neutrophil count for the next cycle of chemo.

I hope this helps?

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]

Thank you Jeni & Sandra for your really helpful responses and reminding me of the technical terms.

This is so useful to me, as my wife doesn't want me to keep asking her what's going on and it really helps knowing that this is something to expect.

She had the chemo today, although she's now been told she's anaemic.

[Veema]

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]

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]

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]

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]

Dianne,

Excellent advice thanks.

[Justamo]

Hello Saxon.

How has Mrs Saxon been feeling this week ?

Best wishes

Mo

[Saxon]

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]

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]

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]

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