Gemcitabine suggested...what to expect

[louisej]

Hi

This morning my mother in law (stage 4 PC with Metastatic liver) has been to see her Oncologist who has suggested Gemcitabine chemo over 6 sessions, however, contrary to most of what i have read about this drug, they are only suggesting 2 weeks treatment then a weeks break rather than 3 weeks.

Does anyone know why this could be please? I wonder if they feel she may not be strong enough for the 3 weeks?

My own mother had chemo for Vaginal cancer and sadly only managed 2 sessions before it became apparent that her body was unable to cope with it and passed soon after. Although i appreciate this will be a different type of chemo, i obviously have this in the back of my mind.

can i ask:

- What day following the chemo session can we expect the sickness etc to kick in? Day 3 / 4?

- Do the side effects materialise after the initial session or 2 / 3 in?

- Am i right in thinking the main side effects are sickness and tiredness. Are there any other things we should be aware of?

- Infection has obviously been pointed out as a concern but again not really sure how this would manifest itself?

Thanks so much in advance

[WifeampMum]

Hi Louisej

My husband is 61 and had a Whipple operation in Feb 2016. Before the operation he was treated with Folfirinox and then chemo-radiotherapy.

He is currently on Gemcitabine which is being given for 6 months on the regime of 3 weeks on, 1 week off. Because from the first month his neutrophils and blood platelets dropped significantly, his dose was reduced to 75% and he had to skip the week 3 treatment of the first 2 cycles. He is now approaching the end of month 3.

A fortnight ago we had a long discussion with our oncologist about how the chemo should proceed, as we were very unhappy that he was missing the week 3 treatments. She agreed to try a 50% dose on week 3 and my husband had this for the first time today. At the same consultation we discussed the option of 2 weeks on, 1 week off and were told that this would be also be appropriate. But we decided to seek a second opinion, we had this yesterday and were told that 3 weeks on, 1 week off, with dose reduction would be more effective than 2 weeks on, 1 week off.

My hubby has suffered minimal nausea (he's takes Domperidone for a few days after treatments to keep it at bay), a bit of fatigue, and flu-like symptoms around days 3 & 4 of the treatment weeks. We were told that the fatigue will probably build up over the 6 months but so far it has been quite tolerable.

Infections commonly manifest themselves through a raised temperature.

One thing that is said a lot on this forum is that everyone responds differently to chemo. I hope your MIL's experience is a good one, whichever course of treatment is chosen.

All the best

W&M x

[boa]

Louise

My husband was on Gemcitabine for three months as an adjuvant chemotherapy after a Whipple for three months. He had very few side effects and was able to live reasonably normally during this period. As W&M says and it's said on a lot of threads here people react differently to chemotherapy. On the question of frequency the regime is usually three weeks on one week off. But the oncologist will have decided what is best for yourMiL.

Catherine

[Kevin]

Hi Louise,

I can only share my own personal experience of Gemcitabine and the most important message as others have said 'everyone is different and will react differently to the same chemo'. I was diagnosed with PC in April 2015 - aged 53 and pretty fit. I had whipple in May followed by 5 months (3 weeks on, 1 week off) of adjuvant Gemcitabine. I was dreading nausea and vomiting etc. I'm pleased to say that I had neither. I did take domperindone for 3 days after each treatment and I can't say if this prevented nausea or not, but if so it did the trick. If it is going to occur I was told it will be during the first 3 days. Patients will normally be given steroid as part of the treatment. This gave me a real boost and I generally felt great the day after treatment although it did impact my sleeping on the first night of each week that I had chemo.

My neutrophils dropped after cycle 1, and cycle 2 was delayed a week for them to recover. After this I was given Neupogen injections for 3 days after cycle 2 to boost the white blood count. This caused them to be a bit volatile - pushing them high some weeks but not affecting me having chemo. I was then swapped to Neulasta which is a single injection after the 1st treatment in the cycle and lasts for the whole cycle. This stabilised the neutrophils.

The biggest impact for me was fatigue. This was severe. My chemo was reduced to 90%, then 80% and finally 70% before I was stopped after cycle 5. My oncologists view was that some fatigue was to be expected. He said to doze for and hour or an hour and a half in an afternoon was acceptable. But to sleep soundly for 3-4 hours as I was doing was not good and I was clearly not tolerating the Gemcitabine. Again, the key message for me was that everyone is different. People in their 20's and otherwise fit and strong may not tolerate it, whilst people in their 80's who appear frail may have no side effects at all.

From my own experience (I've had a recurrence and now on Folfirinox which I'm not tolerating either) I would say don't be concerned about 2 v 3 week regime. Also don't be concerned if the dosage is reduced. The oncologist will design and adjust the regime according to the patients needs and tolerance.

I hope everything goes well for your mother in law.

Regards Kevin

[WifeampMum]

Kevin, sorry to hear that you're not tolerating the Folfirinox well. W&M x

[louisej]

Thanks for your replies.

The first session was Monday (11th) and up until today seemed ok, although a little tired. The anti sickness tablets obviously worked but today is a different story.

The doctor has been (as suggested by the hospital treating) and now she is on her way to her local hospital. He is concerned she may have an infection. She is very disorientated and extremely lethargic.

I hope that this does not mean she will be unable to have her next session (Monday). We moved our sons christening forward to this Sunday to ensure she could be there but that may now not happen anyway.

xxx

[Dandygal76]

Hi Louise,

I hope things have improved because they can come out of the infections very quickly if it is caught early. My dad also had an infection after his first round of chemo and has had only one other since then so it may just be a blip in treatment and is quite common, as it is quite common to miss treatments.

I hope everything goes well tomorrow if you are still going ahead with the christening. It is going to be a nice day weather wise.

Sending you lots of hugs. x

[louisej]

Glad to say we went ahead with the Christening. It was sad as she was still in hospital but we have photos to show her when she is able.

We are still unsure what is wrong. They have released her (Monday) but still seeing things and slurring words. Very emotional. The doctors didnt really confirm if it was an infection or she had taken too many pain killers. She hasnt had ANY medication since Thursday last week (as they advised to stop) and although the pain is not at a level she needs relief, surely any 'overdose' would have cleared through her system by now??

[PCUK Nurse Jeni]

Hi Louise,

Sorry to hear that your mum is still not feeling great.

Do you know if they did treat her for an infection at all? Or did they actually diagnose an infection?

Do you know what her electrolyte blood levels were during the admission time, and did she require any treatment for these?

Did she have any vomiting?

Did she have the slurred speech/hallucinations and feeling emotional while she was in hospital? Does she have any problems swallowing? Are they saying this is down to medication? Do you know how well her liver is functioning?

Since the admission, does your mother in law appear to be improving since discharge, or has she not really improved at all?

Has the gp been to see her since she came home?

Apologies for the questions, but just trying to gain a bit more information to see how we can help.

Kind regards,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[louisej]

Morning

I spoke to one of your support team on the phone yesterday at length which helped.

In response to your questions, yes, slurred speech, hallucinating and in and out of sleep. When they discharged her they really didn't give a conclusive explanation but 'thought ' it may have been the meds.

Her liver function was skewed but again, nothing really offered in terms of effect.

We cant get hold of her treatment hospital despite leaving messages for her key contact and the oncologists secretary.

[PCUK Nurse Jeni]

Hi Louise,

That's great that you spoke to a nurse yesterday.

Pleased that this helped.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[louisej]

This weekend has been such a heart wrenching one. My mother in law has shown no signs of getting 'back on her feet' as we initially expected following the suspected OD last week. She is eating very little, and sleeping the majority of the time. There is still confusion although not as much. The pain is starting to creep back now and i've been in discussions with the Macmillan team so we know exactly what to give her. They have suggested just oxynorm 5ml and paracetamol until they can assess her tomorrow.

The sad fact of the situation is that my Father in law who is 84 has dementia. On friday night he lashed out which has resulted in a complete breakdown of family morale and has caused divides. A decision was taken to remove him from the situation at short notice which we did not agree with. He is desperately trying to understand the situation and is frustrated as he doesn't fully understand the illness and level of severity his wife is facing. He is unable be left by himself. This has meant that my mother in law has now moved to my sister in laws as they need to be separated. although we know this needs to be done to give her the best chance of getting any strength up to start the chemo again, it just makes the situation so much harder. We need to care for him 24 hours a day (with 2 boys under 3 and 2 dogs) and seeing 'Mum' is now harder as further away. Such a sad couple of days.... they love each other dearly but the situation as it was was untenable.

We need to get her strength back up so we can try to get them back together. We have been told that if she has 'given up' they will not carry on with the chemo. She has only had 1 session (2 weeks ago) and as the days go on and we see little progress, i cant help but feel that her body is already giving in. There is nothing of her now and concerned the muscles will give in. I read somewhwere on here about additional intake of creons.... could this help?

[sandraW]

Hi Louise,

What a terribly sad situation you find yourself in, Dementia too is such a heartbreaking condition and sufferers are just not themselves my mum became unrecognizable in her mannerisms and actions.

I hope you Mum in law improves enough to continue with her treatment, in this case I honestly don't know whether increasing the Creon would help, hope fully the Macmillan team will be able to help. take care sandrax xx

[Dandygal76]

I am so sorry you are having to go through this hun, I can't imagine how difficult it all is. What I do know is you cannot overdose on Creon - it is just enzymes and not medication so it may be worth trying to increase it.

The other thing I can suggest which was groundbreaking for us in terms of dads mentality and tolerance to treatments is anti depressants. The change was quite remarkable and there is evidence I have read somewhere that PC causes depression and this is not actually always because you know you have PC but that the depression is more prevalent in PC with people before they are even diagnosed. Just be warned if you try this route is that for first few weeks it can make them down and then ping... my old dad came back. I would recommend to anyone dealing with this to give it a go. As I said to dad... he could always stop them later if it did not help.

I hope that helps.

Much love to you all. x