White Blood Cell Count Low - advice for a newbie?

[Dandygal76]

Hi

My dad had his first round of chemo last week and went for a blood test today before his next chemo tomorrow. His level was 1.4 and they are saying they may either have to lower the dose, give him injections to increase the white blood cells or leave chemo for a week. Does anyone have experience of this because it seems to have fallen a lot over just 6 days and we are disappointed that he may already have to skip a treatment and that such a negative effect is occurring so soon.

Your experience and advice in this would be really appreciated.

Thanks

L

[MSH]

When you say 1.4 is that the figure for the WBC or the neutrophils? The latter are a component of the former and are often the limiting factor with chemo. Does your father have a stent? Low neutrophils can be dangerous particularly if a stent is present. I had an infection probably in the stent after my first cycle of Folfirinox. I was prescribed Neulasta which kept my neutrophils up and enabled me to complete the course on schedule.

https://en.wikipedia.org/wiki/Granulocyte_colony-stimulating_factor

With my second course of Folfirinox the oncologists didn't want to use Neulasta which resulted in many deferred treatments and several episodes of grade 4 neutropenia. I was lucky that by that time the stent had disappeared, and I was able to steer clear of infections, (at least until the chemo was finished).

[Didge]

It's quite common for treatments to be reduced or delayed. Not what you want of course. They will usually do everything they can to enable the patient to be treated though. My partner did not do well on gemcitabine and had so many problems and infections that they finally had to abandon it. But he didn't have any problems with folfirinox, which is considered harder to tolerate, for many months. It is such an individual thing and the doctors told us that it is impossible to predict who will tolerate any particular drug and who won't. At this early stage though it is trial and error so don't be too disheartened!

Didge x

[stmfst]

I'm sorry to hear about the delay in treatment. I know how worrying that can be, especially at this early stage. My husband had the same problem and the hospital decided to send us home with Lenograstim injections after each subsequent Folforinox treatment. This involved injections once a day for three days. Once the District nurse had shown him how to do it, he did it himself, but the District nurses would willingly have come to our house to do them, had we needed it. It just became part of the chemo routine. We had several setbacks throughout the 12 cycles, but were always so thankful that the hospital was looking after him. Didge is right - If they find a problem they will do their best to fix it to enable treatment to go ahead. Good luck.

[Dandygal76]

Hi All,

Thank you for your responses I did read them but did not have a chance to respond. MSH, thank you for you information because I am a bit of a sponge on all of this at the moment - I am a true believer that knowledge is power. I am unsure whether it was for WBC or neutrophils but dad turned up this morning and apparently he was within the trial protocols and so they went ahead with the chemo. We did manage to get them to give dad the medication to increase his WBC count as you and stmfst had, so hopefully that will help with next week and stop them falling further.

My dad has not had a stent. He has had no symptoms at all with his PC other than a pain in the left hand side of his back (the tumour is in the tail). The only other thing that happened is he got diabetes II a couple of years ago but that runs in his family. The pain he had went with the first chemo and he now says he feels better than he has for months and is symptom-less. It is hard to reconcile that with a terminal diagnosis.

However, with this latest issue I have now researched further and am more prepared that set backs in chemo happen quite often and is part and parcel of the journey. I will be able to manage the disappointment better now with the next hurdle and manage their expectations of the future treatments.

I suspect this will not be the last time I thank you all for taking some time in advising me!

L

[PCUK Nurse Rachel C]

Dear Dandygal76,

Apologies for not posting on the forum sooner and for welcoming you on board, as such. Unfortunately and like everyone else, it is probably not the place that you would wish to be, however, I do hope that you find some comfort, inspiration and friendship.

I’m really replying to you from a 2 prong approach, as I have seen that you have also posted under Abraxine, Germcitabine + MM-141 trial - worried wrong choice, as you had concerns that perhaps that you had made the wrong choice, in terms of your Dads treatment. I just want to re-iterate what Leila has said and to re-assure you that your Dad is certainly very lucky to have you by his side, helping him to make decisions in relation to his treatment choices. You have done a lot of research and have carefully considered all the pro’s and con’s….so well done!

As you say, there is never an easy or right or wrong answer. We all do what we think is best, at that particular time and with the information that we have, so please do not have any regrets. If at any point, your Dad feels that the clinical trial is not for him, then he may withdraw from it at any time.

I would also like to thank you, as we were also not aware that this trial was available in the UK. If I am right, it does not appear to be available on the NHS as yet, but we needs to explore this a little further. For anyone who is interesting in reading some further information about it, the link is below:

https://clinicaltrials.gov/ct2/show/NCT02399137

This second link is an American website that gives a little further information:

https://www.smartpatients.com/trials/NCT02399137

Essentially and in really basic terms, MM-141 is the drug being researched. It is a monoclonal antibody type drug and it works by trying to block the receptors or proteins on the outside of the cancer cell, to stop it from growing. The receptor (protein) that it is trying to block, in this instance is an insulin-like growth factor 1 (IGF-1) receptor. It looks like patients need to be tested for levels of insulin-like growth factor 1 (IGF-1) receptor before they can take part in the trial.

People taking part in clinical trials have to be monitored very closely in relation to side effects. The research team will also have very strict guidelines in how to manage those side effects, and this may be specific to the clinical trial and not the standard of care, normally offered. Again, if it’s any reassurance and as you have already mentioned, your Dad will be very closely monitored throughout his involvement with the trial.

I know that it must have been disappointing that your Dads white cell count dropped and that there is a delay in treatment, however, clinical trials often have very ridgid guidance in relation to managing blood counts and the oncologist will have made the decision that is safest for your Dad. This may well be one of the side effects that they need to monitor closely, and it may (or may not) also be an indication that your Dad is actually receiving the trial drug (MM-141), but you obviously may never know this. People who are taking part in clinical trials are also given specific guidance in relation to the specific side effects that they needs to watch out for, when to contact healthcare professionals and who to contact.

I've just read your updated post and am really please that Dad is now able to get treatment....fantastic news!

Also, please do not hesitate to call through to the support line (0808 801 0707) should you have any specific queries and do continue to use the forum, as I can see the forum family has already provided valuable support.

Kindest regards

Rachel

Pancreatic Cancer UK Specialist Nurse

Support and Information Team

[Proud Wife]

Thanks for the link Rachel, I was wondering about this trial for my hubby but see it's only open to those who've not had any chemo yet so Dandygal, having just posted on your other thread that I thought you were doing the right thing, it's now doubly confirmed as far as I am concerned. If your dad started on Folfirinox, he'd not be able to take part in the trial and as Rachel has said, at any point he can always pull out. Best of luck, keep us posted how he gets on xx

[Guest]

Hi,

I know it is a big concern when this happens, especially the first time. You're thinking it is all happening too quickly, Dad will get poorly and soon won't be able to have chemo at all. Your Dad is just thinking that while this happening, the cancer is growing inside him and he will be thinking all kinds of bad things. Completely understandable. Unfortunately it is 'just one of those things'. Easy to say I know. But doesn't necessarily mean a bad thing.

I too have just read your Dad was able to have treatment. Brilliant news and confidence for your Dad as well.

The more you read and learn, the more you will be able to help your Dad. Every setback, and there will be some, will break your Dad's heart, and of course yours, but you tell your Dad the positives of it ( from what you've read) and let him see you are ok with it and you'll do it together. Your Dad with think, she seems ok with this, so so am I, and he will pick up and be ready to fight again.

Leila xx

[Dandygal76]

I will respond more - thank you all. However, I have no time now! What I did want to do quickly is post this link...

http://sarahcannonresearch.co.uk/for-patients/open-clinical-trials/upcoming-studies/pancreas/

They are the research company and as I have said, it is fully funded and travel expenses paid but I think the places are extremely limited. However, we did have to pay for an initial biopsy and some tests for eligibility. In total this was around £4000. But, if you have a confirmed biopsy this should reduce the amount significantly because that was the bulk of the cost.

I just wanted to give a quick pointer in the right direction in case people want to explore further for themselves / their loved ones and have not had any chemo yet.

I am currently also pestering a couple of professors both North and South of here because I have a whiff of potential upcoming immunoncology trials (whether for PC or not time will tell) - I will keep you posted if I make progress because the ones in America seem to take people who have already had chemo. I am dogmatically fighting now to line up the next step as this trial is only 22 weeks. Keep the faith!

Thanks

L

[Kevin]

Hi,

When I started my chemo I was told that it is not unusual for white cell count, especially nutrophils, to be affected whilst on chemo. Mine dropped significantly after my first session of Gemcitabine. I had to postpone /skip treatment the second week whilst they normalised again. I was then given Neupogen (Filgrastin) injections on each of the 3 days following chemo. These were OK for a while. However, my nutrophil levels then started to vary from very high to border line low. My oncologist swapped the Neupogen for Neulasta (Pegfilgrastim). This is a single injection given once per cycle (month) after the first chemo session in the cycle. Neulasta is supposed to be more 'intelligent' and responds to changes in white cell levels. It was certainly more effective for me but it's side effects were greater than Neupogen. It caused me to have extensive aching / flu like symptoms for 24 hrs after the injection. Bearable although I probably didn't think so at the time.....

So in summary. From my own experience, it is not unusual to have low white cell count early or throughout chemo treatment. Missing treatments is also not out of the ordinary. It is easily treated with medication - self administered injections. The later are nothing to worry about once you've done it for the first time.

All the very best for your Dads treatment.

Kevin