Hi fibretech, what type of drugs are they putting you on. I have stage III rectal cancer and i have been on oral chemo( xeloda) for two weeks now and radiation the same. So far i have not had bad side effects other than being really tired. How are you feeling?

Hi Lisa, Oral and radiation therapy do not apply in my case from what I have been told, I will be given Oxaliplatin (for metastatisis cases) and Fluorouracil (both intravenously, I have an arterial line fitted which was not too bad,) bloods are sampled through my arm. These drugs are spcific for the colorectal area I believe, I am under the National Health Service in UK.

I am going to find out more today through an 'introduction session' at the hospital. At some point I may be sent home with a small pump (attached to my waist) but I have no idea about the schedules yet.

I have no official information about the 'staging' as yet but my liver has been biopsied. My best hopes are that the cancer grade (from what I have read) is favourable and the extra 'targeted therapy' drug Panitumumab is an option ( I am being told this is highly likely to be applicable to me, even though there is no official biopsy report yet.)

I hope you carry on with minimal side effects - I think I will be facing those effects soon - will all be worth it if the chemo is effective I guess.

Hiya fibrefletch....Welcome, sorry we don't seem to have the activity that we once had. Many haved moved in to Face book and other avenues. However a few of us still around to share our stories with you, and hopefully answer your questions please feel free to friend me or leave your questions and I will try to respond ASAP. Good luck with your upcoming chemotherapy...Drink plenty of water and fruit .....will helprid the toxins..Ron

Thanks Ron, I will do that, also I am still waiting for a full report. I am not on Facebook!

After getting my Oxaliplatin in the treatment centre, I was sent home with a bottle / pump Its got no motor on it!) with Fluorouracil for an infusion of just over a couple of days - something to get used to, but you can shower (I am told). I have a host of additional pills for side effect in case (non so far) and am taking steroids. I think next week is a rest week.

Anyone else on a similar schedule that I can help feel free to contact.

F.

Hello Fibrefletch, I hope you are not having side affect from your meds. I have rectal cancer and I did xeloda and radiation for 4o days last summer, then I have the tumor removed and part of my colon, in September. I started the Chemotherapy in November which I have to do for eight sessions, once every other week. I am also on Oxiliplatin, and leucovorin through an IV for about 2 hours and then sent home with a pump with Flououracil, for a 46 hour period. I hate that pump lol! I haven't showered with it, I shower before I go get it and then after they take it off, I have one more treatment left as I had to miss a few, my white blood cells were to low. They did lower my dose of Oliliplatin and leucovorin and that has helped. I don't feel as tired and am not as nauseous. I have had to stop drinking water because it tasted gross so I have been drinking a lot of grape koolaid and lemonade. and eating what ever I can. Food isn't that appetizing, but I get grossed out easily lately. If you have any questions feel free to be my friend and I will try my best to help you get through this! sending hugs! Sharon

Hi Sharon, nice to hear from you, I have not been told so directly but reading the recognised symptoms I think my white blood cells have taken a bashing like you, but for me to be off my food things must be bad.

I am preparing to get my second round of chemo tomorrow and another 'bottle', like you described. Funny story (I hope) - at first I thought the bottle was not functioning (because its such a slow feed) and so I phoned the help line (must have been desperate) where I was assured it should be OK if there were no clamps left on - LOL. After a while when I looked more closely at the bottle I noticed a scale on the side. As the 'balloon thing' inside the bottle very slowly shrank the change could be seen very gradually against the scale, to my relief. Of course, you may not have same bottle type.

I may be given Panitumumab tomorrow (not actually classed as chemo I don't think), I am not sure if this is in addition to the two 'regular' drugs - luckily as I have had little in the way of side effects (other than what I call 'deep state fatigue' for a few days) but the new drug may have side effects for me - including making your hair curl which would be a bonus!

I saw my oncologist today and I learned that, all other things being equal, I will go through 6 rounds of chemo before a getting a scan to detect any measurable difference (please God.) Now, this confused me as I thought / have read that the regualr blood tests give clues about the success or not of the treatment (as well as giving the medics a look at your health.) It would be great to find out more ... this could be one to ask 'Ron' ?

Thanks for listening to me wittering on ( i hope you have been listening) - you never know little details can strike a chord and be helpful.

Your friend anytime

Fletch

Hey Fletch. Just saw your entry.. However I already msgd you please keep in touch..your friend

Hi Fletch, I will try to get here more often. It's a difficult journey we are on but we can get through it. My pump runs by battery, today I have the last one. I remember when I started the Dr told me that if I was having a hard time drinking enough, then I should skip a meal to make sure I stayed hydrated. I was told pudding is like a liquid. I can stomach grape kool-aid and lemon are. Food I have been very pickle about. But I eat what I can which seems to be junk food, hopefully I well eat healthier soon. I eat waffles or French toast for breakfast and I eat a banana almost everyday. And banana bread. Cheese and salsa nachos. Some veggies I have started eating more veggies bit was scared of things that could cause gas as I have an illeostomy bag. Eat what you can. I can't drink or eat cold foods right after my treatments or touch cold. My fingers get number and my throat feels weird. Eat the best you can but drinking as much as you can helps flush the chemo out of you body. I get tired a lot, so I sleep when I need to. I am not sure how much they know by your blood work. My white blood cells were low again today but just borderline so because it's my last treatment we went through with it. I hope I have helped you in some way. I feel better now than when I first started the chemo, so things will get better soon. You are in my thoughts and prayers! We got this !

Hi Sharon, and greetings from Birmingham (England)

Firstly, thanks for all that – you're making me hungry!

My Oncologist thought I was able to keep my dosage as it is, so Wednesday I had my second treatment with the and additional drug Panitimumab (a 'targeted therapy' apparently and not a chemo as such) and another bottle for the Flourouracil, which is going today – hooray! (My bottle does not have a battery, I must find out about the mechanics of it) I got home and immediately noticed side effects have slightly increased, (nausea, but not vomiting, 'peripheral neuropathy' (exposure to cold, like yourself which I think is cumulative after more treatments) cold food / drink effect on throat, eye irritation, maybe sore gums and generalised pain – my leg started to hurt! To top it all I had a cold coming on, so Wed night was tough with no sleep and then my blood pressure went 'through the roof' - but I feel better today (Friday) and I think the steroids give a lift, and an appetite. I expect to collapse mid next week with 'deep state' fatigue.

Reading about your ileostomy and back to your first post, I am just starting out in comparison to yourself, and noticed you have had part of your colon removed. My tumor is in my Sigmoid colon, but as the metastasis has caused lesions on my liver, unless the surgeon feels he can remove what remains on the liver after having the treatments, it will not be 'useful' to remove the main tumor - which will either reduce and behave itself, or get worse. I was able to have a stent fitted (reversible procedure) because its my Sigmoid which (and not got a firm opinion on this) means I can eat gradually eat more high residue, although the low residue diet was advised, advice I always ignored. I do produce a lot of gas and that can get uncomfortable at times, but your situation is different because of the 'bag.' However, the high residue foods can also worsen the feelings of nausea, so I can see myself cutting down on them, you might also try drinking the water that vegetables are cooked in - nice.

As classed as 'advanced' I will have a planned 6 cycles of treatment every other week (all being well with the consequences of this) before have a CT scan to note any 'difference' (scans are given prudently because of cost - what about you?), and as Ron confirmed in an email, the CEA readings in blood test are not conclusive with a colon cancer (which is why it got to an 'advanced' stage in the first place – just did not realise anything was wrong and was not in a risk group apart from age.)

I also found out that I have an 'average grade' tumor, but the good news is this OK with the Pantimumab targeted therapy

So my hope is I can keep up the treatment levels to max effect, but after only two treatments I don’t know if future doses will need to be reduced.

Looking forward to gardening (when it stops raining!) despite the 'peripheral neuropathy' I will get out in the garden (wearing gloves) and cut back ready for spring growth! That is keeping me going.
I hope and pray you can enjoy something else now to get your mind of it, but of course it's always with us.

Warm Regards
Fletch

Good day Fletch! I had 8 treatments every two weeks. It was the 6 th one that had to be put off for two weeks. I would have been done on February14th if all had gone the way it was supposed to. White blood cells were to low and then after that was when they lowered the dose, which was very helpful. I wasn't as nauseous or tired. Did they give you nausea medicine. If so us it of not ask for it. Thank you for the idea of drinking the water from the vegetables, never thought of it. You have such a good memory of what is going on with you, I can't even remember how much colon they removed....lol. I will ask next week when I see the surgeon. I didn't really get mouth sores, but I messaged you and suggested using biotene toothpaste it's mild without alcohol. Seems to help and tastes better than baking soda. Also doing mouth rinses with a solution of salt and warm water was suggested, I didn't try that. We have had some teasingly warm days here and then it gets cold again bit definitly looking forward to spring as well! They said I wouldn't lose my hair but it would only thin a little, well it has thinned a lot for me bit I am not bald at least not yet. It thinned out mostly on the left side, which is the side that I slept on. Wasn't comfortable on my right side. Hopefully it will grow back soon. Take care! Sending hugs from Massachusetts

Hi Sharon - Massachusetts - lovely, but now I have got the Bee Gees in my head LOL, but I will go on Wikipedia and read more, to my shame all I know is New England has a great Autumn show.

I have had a rough couple of days and felt I could not even face talking about 'chemicals' - I am now taking on 3 different types and this is the reason I guess I have felt especially nauseous (nausea and tiredness main issues also.) So I have taken some of the prescribed 'nausea' pills 'upfront' (before any issues come on.)

I am thinking I might ask to review my treatment - it could be the cumulative effect of the two main drugs or the new one (Panitimumab, which I think is also giving me stomach ache), after my first treatment I was thinking I could do this easily but not so confident now, we will see, or I could take a break at some stage like yourself.

I will press the Oncologist for a view on 'results' - he must have some clue (before the 6 week scan, via the bloods) and then if I know the treatment and suffering is 'worth it' it would inspire me to carry on being strong with the treatment.

Mouth has generally been OK, but I noticed some slight change at first, although my Esophagus feels tight and painful (like when you eat a chicken bone and it scrapes on the way down and is painful afterwards)

I hope and pray you have brighter days ahead and I look forward to hearing good news ;-)

I am off to clean my teeth at 23:15 GMT.

To Sharon and Fletch I have read your posts
I have to say I have tears in my eyes both for sadness and happiness. I'm so happy that we can come together in times of crisis and reach out to one another. I can honestly say that it is because of the support I received at my lowest point of my life, that I'm here today to offer my support to you. It is sad to have experienced what we have, however I feel that this experience brought me so much closer to God. It has opened my eyes to how fragile life is and how we must learn to live every day to the fullest. When we are filled with the Holy Spirit there isn't anything we cannot overcome. Reach out to the Lord in your dark times and He will get you through the bad days...I promise.. God Bless

Hi Fletch! ❤ It can be very tiring both on your body and your mind. They lowered my meds to 90% instead of 100% it seemed to help but it was only for the last 3 treatments. I do know that you have to be your own advocate and do what is best for you. I told my husband tonight that I hate cooking and don't really like food....lol. Hopefully my taste buds go back to normal is your thought problem only happening with cold food or with everything. Mine was just with cold, you should probably talk to your Dr about this. It's hard enough to eat and drink without suffering more through it. I do love New England for all the seasons that we have, just wish winter was shorter..... but soon enough we will be complaint that it is too hot! Don't feel bad about not knowing about Massachusetts, I know nothing of England either. I believe all places are beautiful and the only way I will see most of the world is through TV. I don't fly, and don't like boats much either, I'm stuck here

Hi Ron, Thank you for being here and helping us and so many others get through this very troublesome time in our lives. You are an inspiration for me!

Hi both Ron / Sharon and thanks for your sincere responses and sharing - this is no time to be bashful or reserved about giving praise to God through Christ our Savour, no matter how things may or may not turn out. He is beyond our understanding, so give thanks in all circumstances.

Sharon I see you guys 'pinched' our place names - Worcester (30 miles away from Birmingham), Cambridge, and of course Boston. I had heard of / fan of MIT because of my interest in networking / web / internet, and 'Boston' (the band) from way back, not to mention the small detail of the Pilgrim fathers as a linking factor! I wont mention what else is going on in the US politically, needless to say it is followed with great interest, and get this – I have not even been to France !!!

I had a 'bad experience' earlier this week - I made the trip over to my empty flat (apartment) in order for the electricity company to replace a faulty meter. Thankfully I did not have to wait long but I needed to snack on food that was 'around' and maybe was 'past its best', including tinned tuna. After a few hours I was feverish, vomiting / bowels loose, but with limited options and no help at hand I just had to wait it out. On top of that the flat was cold and so I just shivered under the duvet for a few hours before returning to my moms house.

I seem to remember reading somewhere not to take 'risks' with food that might be past it's best which probably includes stuff being lurking in the refrigerator for too long , or something as innocent as 'old fruit' - so I mention this for benefit of all, particularly if you are just into a 'treatment'. However, I had Chinese 'take away' food next evening to build myself up again, and contrary to my own advice I refrigerated the leftovers. ( I think I will call them 'treatments' from now on because I am starting to dislike the words drugs and chemo!)

I have developed some more side effects, a slight rash on mouth nose, but its only just visible, I seem to have had every symptom in the book (except for hair loss, well to be honest its mostly gone already but I would not mind keeping what I have!) to a small degree. I feel greatly for women who have to suffer with this side effect.

So I consider myself lucky in many ways to date, but God knows what is ahead, and I will take it by His grace. I guess we all feel awful for a few days after 'treatments' and then you feel yourself coming back for a few precious days before the next round. I have another 5 days before 'Round 3' and I am hoping I can get some quality time to talk over with the Oncologist the options of reducing slightly and what his best advice is.

My current advice for 'cleansing' is Orange juice 'with bits' (if it suites your system.) I realised that my stent is actually a restriction in my Sigmoid, which is ironic because it is put in to overcome another restriction of the encroaching tumor (or possible encroaching tumor.) So I have to keep things moving along but it’s a fine balance, but again thankfully no other related problems arising

We have a nice sunny few days at the moment – I am waiting to spot my first frog in a little pond I created last summer, but now off to cut grass before dark.

Regards
Fletch (David)