9 February 2018 at 8:45 pm #56463
My wife starts tablet form chemotherapy this weekend consisting of temozolomide and Capecitabine and although her care team have told us what’s involved and the list of possible/probable side effects I was wondering if anyone out there has experience of this drug combination and how it affected the patient.
Dave10 February 2018 at 11:27 pm #56465
Hello Dave, and a very warm welcome, sorry, your posting didn’t show up on the site until just now? could be just me having computer problems! The name bike fanatic, sounds just like a friend of mine, he is called Dave too!. Another friend of mine is also starting on chemotherapy shortly, possibly this week, she lives local to me and I do believe her treatment is called Captem, so must be the same combination. However, I know very little about chemo. and it’s use on nets, so much depends where the net is, but I know this drug is used in pancreatic nets sometimes. If your wife is being looked after by a specialist net team, then they will have the expertise and would explain the possible side effects. We all re-act differently to the drugs we have to take, I know that I get lots of things that I put down to the Sandostatin LAR injections, joint pains being one of them. Fatigue is also very common. A couple of things I would suggest, certainly have a word with our very experienced nurses, by e mail, or telephone, you will find the details at the top of the site, also, the foundation has recently produced a booklet, and I would certainly suggest you get a copy, it is very comprehensive, and informative, and of course up to date. Having said that, I do believe that there is a lot happening, new treatments in the pipe line etc. etc. so I remain very positve. I do hope that someone responds who has taken this drug, but I will ask around for you, in the meantime, hope you will keep posting, Carole10 February 2018 at 11:54 pm #56466
Hello again Dave, I have found someone who has had this treatment for a couple of months, and the only side effects he had were change in hair colour, and a ‘scratchy throat’ and both went away after treatment. Carole.11 February 2018 at 8:13 am #56467
You are in for a surprise “bikefanatic” is the same Dave from Uttoxeter, haha got you there.
You were missed yesterday at the first meeting at the new venue at M & S its a really nice place for our meetings. For me and Deb it was a good informative meeting given our recent change to her treatment plan.
Thanks for your replies and as you know we are at a specialist center so are aware of what to expect. I was just wanting to know from – the horses mouth as they say – someone who was experiencing this form of chemo.
Deb took her first 2 hits yesterday, morning and evening and at the moment she has a slightly sore moth and tongue. Early days I know but lets hope she tolerates it fairly well and it doesn’t make her really unwell. She is more worried about hair loss and thinning than anything else. We went out last night to celebrate a friends birthday and she had a good enjoyable evening with some wonderful food.
Oh by the way, hows the move coming along. Take care Carole and see you soon
Dave – formally known as Lola11 February 2018 at 9:29 am #56469
I knew it!! but had to wait to hear from you. We were just talking, and assumed, wrongly, that you didn’t go to the meeting, as I know Nikie would have given you a lot of info. on this chemo. and, yes, I thought you had the booklet, it does cover all the treatments, and earlier on, it gives a list of potential side effects, but, as you know, we all re-act differently, and Debs. may take to this very well. Sore mouth, with ulcers seems to be a side effect with the Everolimus, which is an infinitor. Tell Debs. the injections are now taking their toll on my hair, getting very thin and weakening, not a problem for men though, but of course it worries us ladies, even though we try hard not to let it. Many say they take Biotin tablets, even Donald Trump, but check with the net team, and I use a shampoo called Plantur 39, we can at least try these things. Sorry we missed the meetings, missed two now, but I am getting rather stressed about this house move, yes, we have someone who wants it, we have accepted her offer, but she still has her’s to sell, but we have found a place, ideal, in the village we told you about, so, we just try not to think about it, I am sure it will happen soon. I think you will have my e mail address, from the previous exchanges about the meetings, always here. Last night I asked for any information on side effects, for you, on one of the facebook forums, and as you can see, someone [from USA] responded immediately, I will see what comes in today, I don’t like facebook but use if for my photos, and I find they are very helpful when you need some information. Off to our favourite church now, but it is snowing, quite heavily, so think it will be the main roads, take care, oh and also, we thought, last night, the 53? are you that old!!!! sorry, couldn’t resist, give Debs. our love, speak soon, Carole.11 February 2018 at 2:16 pm #56470
2nd day and at the moment Deb is fine just the sore mouth. Many, many thanks for your help in trying to find the info. Where is the info from the individual from the USA, how do I access it?
Went on the bike this morning with the club and boy was it cold and windy + the snow made it doubly miserable. My age 53, I wish unfortunately that’s my birth year 1953.
Take care Carole
Dave xxx11 February 2018 at 3:21 pm #56471
Hi Dave, yes, what a day! glad we are back home, the snow showers are horrendous. I hope you haven’t changed your email address, as I have just sent you a couple of e mails, so, if you reply to me, by e mail I can let you know the details of the site, but any problem I can send you all the replies, as I do believe that many more will come in, That old!!!! Carole xx12 February 2018 at 9:04 pm #56473
3rd day and Deb is still feeling ok with no side effects from the twice daily capecitabine. I know its still early days but each day she feels ok on it is a massive bonus considering what we were expecting from reading the info sheet given to us by her care team.13 February 2018 at 1:49 am #56474
Hi Dave, positive mental attitude, and that is what you both have, great news. Greg started a new treatment a couple of months ago, and the side effects were horrific, but, fingers crossed, he has non of them, and they told him, if he didn’t get them initially, he should be ok, many failed the first week on this new treatment, so, hopefully Debs will be fine too. Keep posting, Carole.13 February 2018 at 3:28 pm #56475
That’s what living on the moorlands does for you, it makes you tough as granite. Pleased he is coping on the new treatment and long may it continue. Deb is feeling fatigued this afternoon she says just lifting the newspaper to read seems like hard work. She’ll be ok though later on once she’s had a good rest. Yesterday she managed to do a short workout on her exercise bike which she also did Sunday morning as well as a walk to visit a friend. Given she’s had this disease since 2005 we cant complain when you consider there are many who are having a far tougher time of it.
Must go now as I’m going on a bike ride
Dave 🚴♂️🚴♂️14 February 2018 at 10:31 pm #56481
5th day on the capecitabine and Deb is still feeling ok apart from the fatigue being worse as the day progresses. She has always suffered some fatigue because of the disease but it seems that the chemo tablets has made it deeper and longer lasting. Hoping when she goes onto the 2nd drug next week it doesn’t make it worse. We are remaining positive but then again what’s the alternative.
Onwards and Upwards
Dave14 February 2018 at 11:11 pm #56482
Yes, Onwards and upwards Dave, being positive really does work. A friend of ours, who was a consultant and surgeon, told Greg that, many years ago, and it is so true. Fatigue is certainly a problem with these nets. and we all seem to have good and bad days, and I can sympathise with the ‘not being able or even the will to pick and hold a newspaper’, somedays, if I drop something, I don’t have the energy, or the will to pick it up, it is strange, but I just accept this, and enjoy the good days. Being positive won’t guarantee you will succeed, but being negative will guarantee that you won’t. One positive, you have returned!!! how lovely to have you back, we have had so many problems with our forum, and many, who posted on the old one, have not been able to re-join. Please keep updating on Deb’s progress, Carole.15 February 2018 at 8:56 pm #56489
Deb not to good today with the fatigue, looks like the meds are taking a hold. A good point though is there are no other nasty side effects. That said the diaoreah is worse so I guess that’s a contradiction. She remains positive so again its onwards and upwards
Dave16 February 2018 at 12:07 am #56490
Hi Dave, are you due back at the net clinic tomorrow? or after Debs has introduced the second drug? from what I have read, the fatigue is something most seem to suffer with, and of course diarrhoea is something we all have to manage, does Debs take any enzymes [creon/nutrizym 22] to help. There are a lot of positive comments on the site that Debs has joined, patients who have been on this combination, but as we know, our bodies all re-act so differently. Many seem to have sore mouths, and skin problems. I have a few skin problems just on the injections, but we are all putting things into our bodies, which our bodies don’t like and have to deal with. I am having a bad month on the Sandostatin, sometimes I can sail through – almost, then, like this week, the joint pains are quite severe, effects the fingers, thumbs, elbow and shoulders most generally, but I find, if I take the paracetamol and ibrufen quickly enough, I can manage quite well. Keep posting, and updating, it is also very helpful to others who are about to embark on this treatment. On the old forum, we did have the headings for the treatments available, and we could post our own experiences, which `I found a very useful reference, but, I think it is the old, old story, we take one drug, then have to take another to counteract the first one!! Carole x16 February 2018 at 12:14 am #56491
I would also point out, there are some comments relevant to this thread on chemotherapy, under ‘coping with fatigue’ and I know some of you, who read, but don’t always post, do have difficulty finding some of the postings. I find the best way, is to go onto the forum, then on the chat heading, where there are quite a few different topics, Carole.16 February 2018 at 7:03 pm #56500
6th day on the capecitabine and fingers X Deb isn’t to bad apart from the fatigue, talking of which she felt on top of the world this morning only going down mid-afternoon. Considering how it could be with this horrible disease we feel somewhat blessed. It helps of course that she no longer works so thats a big bonus.
Ive been told I have to learn how to iron shirts and other awkward garments, I said no problem but you have to climb a ladder and clean out the gutters. That went down well and I’m surprised I can type this message with 2 broken thumbs.
Onwards and upwards
Dave16 February 2018 at 9:23 pm #56503
Thumbs not normally needed to type with one finger …..17 February 2018 at 1:58 am #56504
Well said Catherine!! no sympathy here either, onwards and upwards Dave, oh, by the way, Greg has had to iron his own shirts for years, Carole.17 February 2018 at 9:25 am #56505
Ok you win. How are the both of you today.
Deb is now on the 7th day of taking capecitabine and just like previous posts she is feeling pretty good, but we guess the fatigue will kick in later. The sore mouth hasn’t got any worse also which is another +.
Going out for a walk this morning as the forecasters said today was going to be dry and bright, well they got that wrong again.
Onwards and upwards
Dave17 February 2018 at 7:47 pm #56507
Beautiful day in London today. Three loads of washing on the line and most of it back dry and waiting to be ironed (perhaps better to leave it there and not say anymore about ironing). For the first time in ages I have energy and am making the most of it! Another plus – I have been doing my church annual accounts and they have balanced!18 February 2018 at 12:41 am #56508
Doesn’t a lovely day make us all feel so much better!! I have done perhaps more than I should, but like you Catherine, my accounts have also balanced, and more things sorted for our local charity shop, it’s been a very productive day. Sunshine on the windows and Greg has cleaned them!! wow. [only inside though, well, it’s a start] Now Dave, I do hope Debs. has not over done it, things are still very positive, speak soon, lovely to chat, Carole.18 February 2018 at 8:20 am #56509
Ok ladies I give in. Anyway, Deb had her best day yesterday since starting her meds. Went out for a walk then got ready to go out to celebrate a friends 60th Birthday. She felt great all day and night and this morning she stills feels good. Funny old thing this horrible disease you never know when it will strike you down. Its always there waiting to spoil your day, but for us it can bugger off and we’ll never let it bring us down.
Onwards and upwards
Dave18 February 2018 at 6:26 pm #56512
Deb is having another good day, went out for a walk again with one of her friends and has been bubbling all day. Oh how I wish it could be like this forever, so pleased for her to see her back to her old self. She starts her second stage of meds tomorrow the temozolomide for 5 days, fingers X she tolerates it as well as she has the capecitabine.
Onwards and upwards
Dave21 February 2018 at 10:05 am #56534
Good morning Dave, hope all is well? How is Debs finding the second drug? Scrolling down on the chat thread, there are postings about chemotherapy, yes, there are different drugs used, but you may want to read this, Carole.21 February 2018 at 2:38 pm #56543
Deb ain’t to bad, the nausea is being kept at bay with the twice daily tabs and the fatigue is manageable. She went for a short walk this morning and is still feeling relatively ok. We have Callum tomorrow for several hours and Deb is ok with that.
She also has the Lanreotide injection tomorrow as well. Her life is ruled by medication and injections. This to be taken on an empty stomach, this to be taken with a meal, this to be taken 2 hours before a meal, this to be taken at bedtime. We have a sheet with tick boxes and times cause without it we would be in a right mess, oh well enough grumbling, how are you.
Onwards and upwards
Dave 😀😀😀😀21 February 2018 at 3:33 pm #56546
Sorry just seen this, I replied to your other post first. Busy, busy!! Well, yes, we must smile, well, I do when I fill my pill box up weekly, taking great care not to drop any, as we have a hoover doggie, check my little pill box I keep in my coat pocket, with all the other essentials in there, they are all changed, when I change coats, check the supplies of Nutrizym 22 in the glove compartment in the car, and the other supplies, the sort of thing you have to carry around, just in case. Now we have Greg’s regime, BP and temp. daily, as well as a pill routine, which starts at 4:00 am he now has a book like mine, with everything written down, lists of our hospital dates, so that they don’t clash, shall I go on!!! But, Dave, Hey, we are still here, still enjoying each day, so, as you say Onwards and Upwards, take care, both of you, and give Debs. our love, Carole.23 February 2018 at 10:19 pm #56557
Well Deb took her last meds of the first cycle of chemo tonight and she has come out the other side relatively unscathed. She has 2 weeks off now before the 2nd cycle. It feels like when you are at work looking forward to your annual leave, so with that said we are going to have a few days away.
Onwards and upwards
Dave24 February 2018 at 1:06 am #56558
Hope you both have a relaxing time away and return ready for the next treatment cycle.10 March 2018 at 1:20 am #56709
Hello Dave, how did you go on at the Christie, I do hope Debs. is doing well, and glad that she is coping with the drug so far. I know you have posted somewhere else but I can’t find it, but anyway, we are both thinking about you, chat soon, and remember, keep smiling, and onward and upwards, Carole and Greg.10 March 2018 at 9:36 am #56710
Good news really from the Christie visit, Debs bloods are normal and they are keeping her on the same chemo dosage. We thought they might up it with her tolerating it fairly well. Fingers X the side effects she experienced on the first cycle wont be any worse. She is coping remarkably well emotionally, but then again she has been for the last 12 yrs since diagnosis.
Hope you and Glen are ok
Onwards and upwards
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