Mum of 42 recently diagnosed inoperable PC

[Proud Wife]

Hi Ruth

Really, really pleased to hear the fantastic news on your CA19.9 markers. To me, that definitely means you are responding to treatment. Not long now to your scan which will hopefully give you a further boost. Are you finding the tiredness/sleepiness easy to cope with than the steroids?

In the meantime, just listen to your body and sleep when you need to sleep.

Take it easy

PW xx

[Ruthus]

I have not been on the forum for a while and thought I would just post a little update.

I had my mid treatment CT scan on Thursday last week. I won't get the results for a few weeks as the Consultant said the scan needs reporting on and then they need to discuss my case in the MDTM which happens on a Wednesday. I doubt all of that would have happened by this Wednesday due to the long Easter weekend, so it sounds like my results and case will be discussed in the Wed 6th of April meeting.

Well, it's been a disappointing morning for me today. I was due to have my 7th cycle of Folfirinox today but at my review on Thursday my neutrophils were only 1.1. The hope was they would have increased to 1.5 or above by today. We got to the hospital at 8 a.m. I had my bloods taken at 9 a.m and we waited for the results over the next hour. My name was called out to go up to the treatment centre and I had my hopes that that this meant my bloods were ok and the 7th cycle would go ahead today, however the nurse on the ward told me that although my WCC had recovered really well since my 6th cycle, my neutrophils were 1.3 and although borderline it's deemed too risky for treatment to go ahead as Folfirinox is so toxic. Treatment has been deferred to next Monday.

I felt really disappointed as I had really wanted to have the treatment today for a few reasons. The first reason being to just get it out of the way, the second reason being we are going to our place in Spain on Thursday and had hoped to stay until the Wednesday, which would have meant an escape until my next review on the Thursday. We will have to come back on the Sunday night now. The third reason being I just don't like having to go to the hospital! But then who does!

The nurse said that so far I have tolerated treatment really well and I am a bit of a wonder woman in how well I have tolerated it, but as my neutrophils haven't been right on two occasions now she will discuss whether the dose needs to be reduced and altered with the Consultant tomorrow. She said it was very common for dosages to be adjusted and most don't make it through the 12 treatments without some alterations in dosage. We suggested whether 3 weekly treatment would be an option and keep the dose the same, as this would give my body time to recover and also longer in between treatment to feel well and do things. She said this could be a possibility and to discuss with the Consultant so we will have to wait and see.

I am feeling ok about this now and will make plans over the next few days whilst feeling well and will also look to a shorter but lovely break in Spain.

Ruth

[MSH]

It is so frustrating when treatment is postponed particularly when it impacts on travel plans. It was always my neutrophils which prevented treatment with Folfirinox. During my first course I was given Neulasta which boosts the neutrophil count. This allowed me to have treatment on schedule and prevented any further infection,(I had a fever probably secondary to an infected stent after the very first cycle). In fact I've seen it argued that anyone with a stent should have something like Neulasta whilst having Folfirinox. During my second course, treatment was every 3 or 4 weeks as they wouldn't use Neulasta again. I still had episodes of grade 4 neutropenia (<0.5) but escaped infections as my stent had disappeared.

The plus side of delayed treatment is that you have an extra "good" week so enjoy your time in the sunshine.

Mark

[Proud Wife]

Hello Ruth

Good to hear from you.

You haven't mentioned how you got on without having steroids? Personally, I think it's a good idea that you have folfirinox every 3 weeks as I mentioned before because it did allow my husband time to recover and he managed the whole 12 cycles, although Oxyliplatin (forgive spelling) was removed after cycle 8 or 9 due to neuropathy. I would however, recommend that you keep a close eye on your CA19.9 markers.

Looking back now at my hubby's scans and blood results with the information that we now have, progression must have started before cycle 12 had been completed although to what extent I don't know. All I do know is that he had cycle 12 in January and by scan last week, further spread has been significant between January and now. Now, we will never know if that's just natural progression or was it because treatments were spaced out longer than recommended.

It's just such a hard balance, risk -v- reward and only you can decide what works best for you and your life style. 3 -4 weeks between treatments allowed us to have a good few holidays which I strongly believe has helped my husband's physical condition and enabled him to endure all 12 cycles. I can understand why you would want to escape to you place in Spain whenever you can! xxx

[Proud Wife]

Was there a specific reason why you were not given neulasta during your second round of treatment Mark? Initially when hubby was having folfirinox fortnightly, he had a neulasta injection every other treatment. Once he changed it to every 3 weeks, he was told he needed a neulasta after every single cycle.

[Ruthus]

Is neulasta the same as the Filgrastin injections Mark? I take the Filgrastin injections for 5 days post chemo. One thought as crossed my mind today and that is each time I have my review I am weighed fully clothed and with boots on. Last time I was weighed on the hospital scales I was 9 and a half stone but when I weighed myself at home without clothes I was only 9 stone. I know they work out dose according to weight so think I need to brink this up with my Consultant.

PW - I am sorry to hear of your husbands progression. I hope he is managing to have quality time still. In answer to how am I doing without steroids,...I am definitely more tired and sickly for a few days following the chemo but am managing this with sleeping and taking a stronger anti emetic. I seem to pick up on day 4-5 and feel my normal self the second week. I have found my moods have been more even without the steroids. I know everyone is different and some people find steroids vital in managing sickness. I have been lucky with this so far! My appetite isn't as good either and I have to make sure I am making myself eat

[MSH]

Yes Filgrastim has the same function as Neulasta.

[PCUK Nurse Jeni]

Hi Ruthus,

Sorry to hear about your delayed chemo and interruption to your travel plans. Think for most chemo regimes, 1.3 would be reasonable for a neutrophil count, and many oncologists would go ahead on that reading. However, as you rightly pointed out, Folfirinox is a lot more toxic, so its not worth taking the risk - its just a shame that the trip to Spain will be cut short.

With regards to weighing, it really doesn't matter if you are weighed with your clothes and shoes on, as long as you are weighed the same way every time, and on the same/similar scales. Tracking weight will still work as long as you are weighed the same way every week. so, I would not read too much into this. Most hospital scales are digital, and are calibrated regularly, even the old fashioned ones are calibrated! So, it should be fine. Fluctuations in weight which would impact dose banding are still picked up as long as its consistently done.

Kind regards,

Jeni,

Pancreatic cancer Nurse Specialist.

Support Team.

[Ruthus]

Well I have just returned from my mid CT scan and results/review. It has been a very anxious afternoon and we ended up waiting 2.5 hrs before we saw the doctor. The good news is that my mid point CT scan shows there is no spread and the cancer is contained. The doctor said this is good news and they see the disease as stable. I have now had 7 chemotherapy sessions and the plan is to continue to 12. I have only had once two week cycle as either my bloods haven't been ready or we have been on holiday. I have mainly had 2.5 or 3 weekly cycles.

Although the mid scan results are positive, the information which threw us off kilter and upset us was the measurements of the tumor. When I had the initial CT scan at a General Hospital at the start of November we were told the tumor measured 1cm x 1.9cm. Today the doctor told us that the initial tumor size was 3.5 x 2.4 cms and the mid scan indicates it is 4.1 x 2.3 cms. We questioned this and he told us that the staff at the specialist cancer hospital where I am being treated reviewed both scans this week and these are the measurements which are much more accurate.

I have spoken to my husband and we have thought that as I didn't start chemotherapy until 6 weeks after the first scan there could have been continued growth and actually the chemotherapy has shrunk it.

We were also hoping my case would have been discussed in the Specialist Multidisciplinary meeting this week but it wont be discussed until next week and I will have a further wait. I was hoping to find out information today with regards to arterial and venous involvement but this won't be determined until next Wednesday.

I had been hoping that nano knife maybe an option for me but am now worried the size of the tumor maybe too large.

[Proud Wife]

Hello Ruth

Oh my goodness, those 2.5 hours must have been the longest hours ever. It is excellent news that your scan has shown no spread and it contained. That's brilliant.

Was your initial scan at the general hospital a contrast scan by the way? My husband initially had a non contrast scan which is not as clear a contrast one. If both scans were reviewed at the same time, then I would trust what you were told today but have you got the sizes round the right way as it would appear the mid scan shows it to be larger?

I think you are right about the 6 week wait for chemo. My hubby finished chemo in January and 2 months later there has been significant growth. I have no idea about nanoknife but would be interested to hear when you learn more as my hubby's pancreatic tumour is larger than yours and I keep wondering if nanoknife is an option for him.

PW xx

[Helliemo]

Hi Ruthus,

I think you should email your CT scans over to prof and go for nanoknife. He can give you a second opinion on the scans and I think he can ablate tumours up to 5cm. It really is worth considering. And sending the scans over just to determine eligibility.

My grandma's cancer had given her a new onset type 2 diabetes. Since the nanoknife her diabetes seems to have gone. She is yet to have a follow up CT scan, but so far she's been amazing.

All the best to you xx

[PCUK Nurse Jeni]

Hi Ruth,

Good news that your cancer has not spread anywhere.

Regarding the measurements, could be that the tools used for measuring were different? There is a specific criteria which is used in measuring tumour size, and it might be that the original CT was not measured in accordance with this criteria - this can happen.

Also, when it comes to measuring tumours, the response criteria is measured in percentages - so for example, just because something measures slightly bigger, it does not necessarily mean "progression of disease". There is a % margin which things come under when measured to class it as one of the following:

Stable disease, partial response, complete response or progressive disease.

So its all worked out fairly accurately.

Nanoknife is suitable for tumours of 4 cms or less. Yours should be fine even at this stage as its only a tiny fraction over this. Best to get the scans seen post cycle 12 of chemo. As this will be the most accurate and up to date measurement.

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse,

Support Team.

[Ruthus]

Hello PW - I'm not sure the first scan was a contrast scan but I am aware I had dye injected into me for both scans. The stent was placed in after the scan and this may have changed the presentation of the tumor. The doctor told me yesterday that it is very difficult to be precise regarding measurements. However, I was shocked that there was such a difference to what we initially thought the size of tumor to be.

Despite this it does mean the tumor hasn't grown since the first scan. I was disappointed that my case hadn't been discussed in the MDT meeting with the surgeon and other specialists as really want to know what the venous/arterial involvement is. Thanks Hellimos I am keen to pursue nano knife and am going to email my Consultant today to request my recent scans are sent to Dr Leen for assessment.

[Ruthus]

Hi Jeni

We overlapped responses. I am a little confused regarding when nano knife should be considered as I have read that the combination of nanoknife alongside chemotherapy is thought to be more effective as it allows the chemotherapy to penetrate the tumor better. Would it not be better then for nanoknife to be given mid treatment then? I have just had my 7th chemo cycle and due another 5. I am worried that if I left it the disease could progress in this time making nano knife not an option.

Helliomos - Was your Grandma's tumor inoperable and what size was it? What effects has nano knife had on her tumor?

[PCUK Nurse Jeni]

Hi Ruth,

It can be done while you are on your primary chemo treatment, or alternatively, see them as two separate treatments, eg:

1. 12 cycles of folfirinox

2. Chemo with Nanoknife - the chemo would be advised by nanoknife practitioner.

A bit like having chemo/radiotherapy - you would complete the main chemo treatment first, then onto the chemo/rad treatment. But, yes, either is possible - so you could have it during the folfirinox.

Nanoknife practitioner can help guiding you regarding best timing.

Jeni.

Pancreatic Cancer Nurse Specialist.

Support Team.

[Ruthus]

Thanks Jeni - that is very helpful

[Ruthus]

I have requested my latest CT scan results are sent to Professor for review, so will await outcome. I really feel I need to be proactive whilst there is no indication of spread.I am hoping I will find out nature of arterial involvement over the next week. Thanks for the advice and support.

[Proud Wife]

Good luck Ruth! What you are saying makes perfect sense. Although I realise now, thanks to Jeni's information, that nanoknife is not an option for my hubby now due to size of mets, I am really interested to hear how you get on. Please keep us posted if you can.

By the way, if you had dye injected both times, then yes, it was a contrast scan. xx

[Helliemo]

Hi Ruth,

My grandma's tumour was inoperable and 3cm just before ablation. I wish I had arranged an earlier nanoknife appointment because by the time nanoknife went ahead, there were two tumours in her liver.

Chemotherapy had done very little for my gran. But since nanoknife, everything seems to be back to normal. Scan next week, so I'll update when we know more xx

[Helliemo]

An oncologist told my grandma to drink a teaspoon of bicarbonate of soda dissolved in a glass of water 4 times a day. He showed me the research behind his suggestion and since doing this my grandma has had no indigestion problems. However, not sure if it's down to nanoknife or bicarb. She has also started to gain weight!! Which is amazing. And one more thing, she takes life extension biocurcumin bcm 95. Based on results of another study x

[Ruthus]

I will definitely keep you posted PW! As soon as I get feedback from the specialist meeting and Prof I will let you know!

Thanks for the information Helliemo. I realised I have spelt your name wrong in previous posts! It appears that if nano knife is appropriate that some people can have very good results without the horrid side effects of chemo. Fingers crossed,.. However don't want to pin hopes on this happening so will just wait and see! It might be if Prof does think nano knife is appropriate he may want me to complete 12 cycles of the fox first. Who knows! One thing with this illness is having to learn to live with uncertainty!!

That is interesting regarding the bicarbonate of soda as a friend has researched this and told me to take it as apparently it makes the gastric system alkaline which cancer cells don't like. I tried it in a juice and not surprisingly it all fizzed up! Ha! I will give it a go with water. I have also read about curcumin and I take 10,000 mg dose each day along with 2 bitter melon capsules, a multivitamin/mineral, garlic capsule, slow release vitamin C and cod liver oil,.. All washed down with a daily juice of spinach, kale, broccoli, berries etc,.. As well as the delicious creons. What a mix! I have no idea if it is that helpful but I think at least it is giving my body good nutrients.

[Helliemo]

Amazing! My grandma takes those and more! I'm obsessed! We have an amazing oncologist who looks into all of these things too. Also going to London hospital of integrated medicine on Tuesday to try to find out about all complementary options as chemotherapy has been so dreadful for my gran. I'll let you know of anything promising that comes up.

All the best x

[Helliemo]

You sound so healthy, Ruth. You'll beat this thing x

[Helliemo]

I took my grandma to the xx hospital of integrated medicine today. She is now doing mistletoe therapy 5 days a week. The doctor said that clinical trials have shown mistletoe to double survival in pancreatic cancer and improve life quality. Your doctor can refer you to the xx hospital in London if you are interested.

We are also now swapping the bicarbonate of soda to alka tabs, supposed to be better for you.

Also trying low dose naltrexone.

Hope this helps xx

[Ruthus]

That's really interesting! I read the story on this site "Inoperable pancreatic cancer stories" where a lady has had misteltoe therapy. I had never heard of it before. Is it just a one off 5 day treatment and is it on consecutive days or is it a longer treatment. I am just thinking of the logistics of going to London if this was a possibility.

Forgive my ignorance but I'm not sure what Naltrexone is? you are certainly being incredibly proactive and supportive to your Grandma.