Newly Diagnosed

[RLF]

I hope Pete can manage the abraxane/gem well and feels better. even though chemo is so tough it's something we definitely rely on and it's definitely scary when you think about it being withdrawn. Got everything crossed for you both too x

[stepuha]

Dear Elaine,

Thinking about you and Pete today. I hope the dose reduction will make it easier for him. My doctor prescribed me a solution of bicarb sodium 1.4% with Gem-Abraxane and suggested to keep rinsing my throat with it even if there are no ulcers in the mouth. Apparently it may help prevent them from happening. I didn't see if Pete had the same prescribed but it may be worth trying. I also found that in the second month of Gem-Abraxane the symptoms got easier, it is like the body gets used to the side effects. Sending you love and positive energy.

x Stepuha

[Proud Wife]

Best of luck to Pete today Elaine. You both deserve a bit of a break xx

[Elaine123]

Hi everyone thank you all for your replies wishing Pete well today. Stephua I will get that tomorrow and start Pete on it because he took thrush on his throat last time. That was great that your side effects got less severe as you went through the cycles I will tell him that and it will give him a bit of a boost. Thank you Stephua and I hope you are having a good day today.

He was in for over five hours today as the chemo unit was so busy so he is home shattered and freezing . Got him changed into his warm joggers and fleecy top and he is now on the sofa under a fur throw and snoring his head off. They have given him a one weeks course of Prednisolone four to be taken in the mornings to promote his energy they said. Does anyone have any experience of them? I hope everyone is having a good day .

Elaine

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[stepuha]

Thank you Elaine, today I am feeling like there is nothing wrong with me whatsoever and I am loving it

I believe Prednisolone is a steroid. I am usually given a different steroid (Cortisone) on a drip just before Gemzar-Abraxane. I always had it with this chemo combination, so I don't know how I would feel without it. I do tolerate this chemo quite well though and Cortisone may very well be part of the reason why. I also read on other threads here that steroids make it easier to tolerate chemo but they have their own side effects.

I forgot to mention one thing about bicarb solution, the rinsing is recommended after each food intake.

I really hope you both get a good night sleep and have a good day tomorrow.

x Stepuha

[Elaine123]

I feel maybe I shouldn't be posting this and tempting fate but we have passed that dreaded third day after chemo when Pete usually crashes and either ends up with a GP visit or a hospital admission. He has tolerated the reduced dose a lot better. He is still feeling very fatigued but has not been sleeping most of the day as he usually does. It is such a boost to have him awake for longer. The only downside is that he is getting back an aversion to certain foods and his appetite has fallen away a bit again but we have started back adding to his nutrition by supplements again. The hospice nurse visited on Friday and said she is going to speak to the oncology Dr to see if she can arrange for his bloods and weight to be taken at our local health centre to save one of the long tiring journeys to the cancer unit each week, that would be a huge bonus as the two journeys back to back are tiring for him and he is miserable after each one. We have never been told his C19-9 marker figures should I be asking this or is it something else for me to become obsessive about and focus on as I tend to do. He has just had his first chemo of his second cycle and I don't know if maybe it's too early for them to be changing. If truth be told I feel as though I am just getting to grips with doing everything I should be doing when another worry worms its way into my head. Although I know I wouldn't be this confident in dealing with this if it wasn't for the support and knowledge from you all plus the nurses.

I am almost afraid to wake Pete this morning in case the roller coaster is on its way down again. ( Stop all this nonsense Elaine this is going to be diamond week.) for everyone I hope.

Elaine

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[Guest]

Hi Elaine,

Good news, let us rejoice in that.

The CA19-9 marker thing is definitely something that people get obsessive about. Will knowing that it is going the wrong way make you and Pete miserable or not, can knowing change the outcome? Only you know the answers...

Louis CA19-9 markers were really good, the specialist nurse used to tell us that all the time but the doc said they are not something to rely on as so many things can make them go up and down, and in our case, it would just have added misery as there was no way back, so we didn't bother.

Others will tell you that trends (not just one result) upwards are a strong indicator that time is running out and others will say that them going down means the tumour is being reduced or slowed and this makes them feel better.

Live for the moment Elaine, make the most of the good days. The sun is shining here and I hope it is shining on you both xxx

[stepuha]

It is good to hear that Pete is feeling better. I imagine it is very tiring to travel a long distance two days in a row and it is good of the nurses to consider doing some of the tests locally. I have a two hour journey each way to my cancer centre and I also find the travel exhausting.

As to CA19-9, after the first one month cycle of Gem-Abraxane, my marker reading went up by about 50% which caused me a considerable distress. The oncologist told me it was too early for the marker to drop. It only just started dropping slightly after month two on the chemo, but by then I already had a scan which is more reliable than CA19-9. Every time I have this test my anxiety level goes through the roof. I am keeping an eye on it to help me make a decision when to leave the trial and go for Nanoknife. I think it is only worth following if there are other treatment options under consideration. Did the oncologist bring up other treatments that could be suitable for Pete at this time? Would he consider furry fox for example?

Fingers crossed you are both having a good day.

x

[Elaine123]

Thank you M and Stephua for your advice and explanation of the C19-9 markers. I have decided not to ask for them as I think Pete would end up worrying if they are slightly increased. My Mum used to say to me when I continually asked questions as a child " what you don't know cannot hurt you " so we are maybe best not knowing as it won't change anything.

Stephua I'm afraid that they have ruled out furry fox as they thought Petes physical health was not strong enough. I hope you are still feeling as good as you were a couple of days ago . I can understand that with going for the nano knife that you need to take notice of all these levels and markers....what criteria do you have to meet to go for the nano treatment ? Thanks again to both for your welcome advice .

Elaine

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[stepuha]

I think you are right, Elaine. Knowing CA19-9 won't help you at the moment.

I had a few very nice and active days with the family which was lovely. I am going back to the cancer centre for the furry fox tomorrow and already have signs of anticipatory nausea.

Prof says I can do Nanoknife now but spread out over three procedures (three times the price). I believe the tumour should not be bigger than 4cm to qualify. I also have liver mets, hence the three procedures. The location of the tumours is also important but that all seems to be acceptable in my case. It doesn't matter how raised the CA19-9 is, as far as I know.

The dilemma (besides the price issue) is that my trial is currently showing good results and once I leave the trial I can't come back on it, so I won't be able to access Gem-Abraxane (it is not available in France outside of the trial). I don't want to stop the treatment that is working for the treatment that doesn't provide any guarantees. Rising CA19-9 levels indicate that the trial has stopped working, so it is time to consider other options, i.e. Nanoknife.

Wishing you good days ahead.

x Stepuha

[Proud Wife]

Hi Elaine

Is Pete on steroids to increase his feeling of well being and to give him an appetite? If not, you may want to ask for a short dose.

With regard to CA19-9 markers, everyone knows on here I'm fierce where those are concerned and Marmalade has summed it up nicely. However, every situation is different and I think to ask for the markers only to find them going up would do Pete no good whatsoever. That would really take the last bit of hope away from him so on this occasion, ignorance is bliss!

Someone can correct me if I'm wrong but I seem to recall that in the early days, markers can rise before they fall, even when chemo is working because of something to do with dead cells (or something) from the chemo that are in the blood stream at the time of testing.

Good luck tomorrow Stephua, that anticipatory nausea must be horrendous to deal with on top of everything else.

Much love to all my forum family xx

[Elaine123]

Yes the steroids are to help the extreme fatigue and he only gets them for seven days. You are so right Pete and I would become fixated on them and I don't want to jeapordize Petes hope that he has that the chemo will work. Mind over matter eh !

Oh Stepuha as PW said that anticipatory sickness must be terrible for you. Three nano knife treatments will be so costly but you cannot put a price on a procedure that works for you. I am glad the Gem-Abraxane is a success for you and you are not having the worst of the side effects. Thinking of you and wishing you continued "normal " days with the children.

Elaine

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[stepuha]

Thank you PW and Elaine, the chemo went as expected. The nurses were so lovely trying to help as much as they could. This morning I was given anti-vomiting and steroid injections. That should hopefully pick me up. I am just glad this is the last of FF for a while.

You are right Elaine, one can't put a price on a procedure that works. If only there was more scientific evidence that Nanoknife does, if only it was approved by anyone for the treatment solid tumours, then a decision would be an easy one. I can't wait for Prof study to be published. I am pretty sure I will end up going for it, just waiting for the right time. The american study advised to have 5-6 months of chemo before Nanoknife with more chemo to follow. I am only at the end of my 4th month, so I think I will sit tight for the next two months (assuming CA19-9 doesn't start to rise earlier).

The sun is shining today, it always makes me feel better.

Wishing everyone a peaceful day.

With love,

Stepuha

[Elaine123]

Hi all Pete was at the clinic yesterday for his bloods and to see the Dr. Bloods were OK so chemo going ahead today. As I sad he has been fantastic all week and eating everything he can get and we expected another weight gain but when he stepped on the scales my heart plummeted he had lost three pounds. This has worried me all night and I don't know if this is " normal " especially as he ate so much over the week. Another day another worry it is relentless as you all know. With all the ups and downs we go through usually I just accept that okay this is another twist in the road we will get through it but yesterday for some reason I didn't feel that way and it's been hanging over me like a black cloud since then. He was also taking a Procal shot every day over and above the meals and snacks. He has also developed an obsession for packets of mint assortment sweets and is going through them at a terrible rate all day long, he rarely ate a sweet prior to this. Maybe I am just fixating on this because everything has been so good this week , the first for a long time that he has not slept away most of the day. Okay enough of this defeatist attitude time to paint on the smile and wake Pete up to get ready to go for chemo. Love to all and hope everyone has a good day .

Elaine

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[Veema]

It might show on the scales next week...that's what my slimming world consultant always said...

Pointless me saying try not to worry...everything worried me, weight in particular.

Onwards by all means Elaine...huge virtual hugs.

Vx

[Guest]

Hi Elaine,

Veema is spot on, things have been going well this week so try not to fixate on one thing which is less than perfect. Good times are so precious that it's a pity to spoil them, especially if you can't change it. All you can do is deal with today, tomorrow and so on and do your best to keep the calories going in.

Much love xxx

[Dandygal76]

Elaine, the weight will fluctuate regardless... fluid retention being a biggie around chemo. Focus on the overall trend and not just one days weight. x

[stepuha]

Hi Elaine,

How is Pete after yesterday's chemo? I hope he can still take steroids this week. It sounds like they really helped.

As the others mentioned, I also find that my weight fluctuates by 2-3 pounds all the time. I am sure fluids have a lot to do with it.

I can completely understand why Pete likes his mints so much. I recently tried minty tic tacs and they just help with that funny taste in the mouth, which in turn helps with nausea.

Wishing you both a nice weekend.

x

[Justamo]

I do hope Pete got through his chemo OK yesterday. It does weird things to your taste.

I had chemo 14 years ago and still can't bear coffee. I love the smell, and really miss it - I used to get fired up on strong coffee in the mornings, but since chemo it's tasted awful to me. Tea just isn't the same somehow.

My Peter is now overweight but I'm loath to do anything about it in case he 'needs' the extra weight later on. I put him on the 5/2 diet in February last year and he was at his perfect weight of 10st 7lbs in June, and then the weight loss just kept on despite returning to normal eating. That's when we first realised that something was wrong . . . If Pete likes minty sweets, what about getting him some mint choc ice cream, defrosting it a bit, adding some procal powder and refreezing it ? Might help to put on an ounce or two.

Peter says that nothing tastes of very much any more and I'm adding sweet chilli sauce (yuck) to practically everything except custard. I'm also using preserved lemons rather than lemon juice to cook fish because that's tasting bland to him as well. Tonight he's having mince and tatties and I'll shove some garlic in it once it's defrosted.

Hope Pete is OK over the weekend and that he doesn't react too badly to the chemo.

Love, Mo

[Elaine123]

Hi Mo and Stephua he has been good since his chemo on Thurs and yesterday we actually went out to the library and then the chemist and he sat in the car while I ran in for some groceries. He was up from bed a short time ago and you could see the fatigue in him so he is now back lying down think this will be his usual third day and he wil just crash all day. Then Sunday and Monday he will climb back up again until chemo on Thurs. No wonder the weeks are flying in we seem to get to a Thurs really quickly but our week really consists of only four days. Mo I've never heard of the 5/2 diet what is that one.? Poor Peter back to everything being bland and tasting so different , does the chilli sauce make a difference. Hope you don't mind me asking .....what weight was Peter at the outset. Have put the mint chocolate chip on the shopping list and will doctor it then freeze it. Better go and get tidied up we have friends from Manchester coming up for a visit today which I might add Pete is dreading , him and Alan are best mates but he said he just cannot be bothered talking. So will be a lovely day lol. Take care and wishing you all a good " normal " weekend. Hugs

Elaine

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[Justamo]

Hi Elaine. Peter was almost 12st last January (2016) which was much too heavy for 5'5". He claims to be 5'7" but lost 2" after a laminectomy 30 years ago. I tried various diets and generally played bad cop until I saw Dr Michael Moseley's tv programme about intermittent fasting. The idea is that you eat normally and sensibly for 5 days a week and then fast on 600 calories for 2 days (not consecutive days). Peter lost 2lbs a week on average, we only had to count calories for 2 days a week instead if 7, and he coped with it very well.

By mid June he was 10st 7lbs which was just right. In July he felt unwell and by end August he was 9st. Now he's nearly 12st again, but I don't want to do too much about it in case he 'needs' the weight later on. I appreciate that too much weight puts a strain on all organs and isn't doing his sudden onset diabetes much good so maybe we'll chat to his GP about it.

He's in bed today, feeling grotty, headache etc. Normal third-day-after-chemo syndrome. I'm not doing much, sore spine after a full day at a keyboard yesterday so perhaps some therapeutic exercise like cooking or cleaning is called for. Or maybe I should just chill out and get into Boris's sleeping bag with him. He's been in it since Thursday. Just comes out to powder his nose and eat. Meantime I'm watching Niger Slater doing something new and exciting with pineapple chunks on Saturday Kitchen.

Hope Pete enjoys his mint chocolate chips ice cream.

Love Mo

[Proud Wife]

Dare I ask how yesterday went Elaine? Did Pete perk up in the end?

It is very difficult when the food tastes bland or different. Hubby used to say that Cherries tasted like fish and he suddenly couldn't eat things that he really loved. All you can do is keep experimenting. Keep the subject of food and weight light and keep portions small but regular if he's struggling to eat.

Lots of love

PW xx

[Elaine123]

He wasn't too bad when they arrived but you could tell he wasn't really taking the conversation in after a while and strangely I noticed that when he was answering something he constantly looked at me and I felt it was noticeable , I have no idea why !!!

Today has been a nightmare for him , he didn't get to sleep until about 4am therefore was shattered when he got up out of bed and then took the hiccups which he still has 11 hours later. I read that steroids cause this so will contact GP first thing tomorrow , he tried Buscopan and also metocloporide but to no avail, this has meant he couldn't take much to eat but did take an enshake. Never a dull moment eh......will let you know how we get on. Hope Peter good tonight and you. Hugs

Elaine

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[Guest]

Hi Eileen,

I saw on another thread that Pete did not have his chemo and that you thought he had an infection. Just wanted to say that I hope you both manage to get some rest and that Pete improves shortly. We all tend to go into worry mode when there is the slightest hitch so I am trying to encourage you to relax and rest.

Big hugs

Marmalade xxx

[Elaine123]

Thank you M. We were at clinic yesterday and seen the oncologist and explained that Pete has felt drugged the past few days since starting on the Chlopromizine to stop the hiccups also the the Prednisolone he recently was prescribed. So he has to stop the Chlopromizine and has to halve the Prednisolone to 10 mg a day. If the hiccups return he has just to take two or three until they cease. His blood results were not through and we received a call later to say his platelets were low therefore no chemo today and next week is his free week which will still take place. He assured Pete that this is normal on Abraxane and Gemcitibine so he doesn't feel too bad about missing this week. To be honest M he has had such a horrid time on this chemo that I think two weeks off will give him a badly needed break and a chance to build himself up a bit and maybe feel a bit more like his previous self . We also woke up to very heavy snow today and the journey to the cancer unti would have been a nightmare. We have always been a very close couple but we're always Independant of each other and I am finding that when I happen to look up he is always watching me and even when talking to the family he looks at me while answering them. I cannot explain it properly but it is so unlike him. Maybe I just spend too much time reading things into situations now or maybe by being on here you all have made it so much easier for me to cope with the ups and downs and new symptoms that I have more time to dwell on still trying to get my head round the past three months also the unknown of the future. Sorry for rambling I am just having a bit of a wobble today. Thank you all for your continuous support.

Elaine

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