Hi Graceland girl
Id say go especially as your oncologist has said you are fit to travel. Pace yourself as others have said. Since my secondary dx in 2008 we have gone several times to USA and also to South Africa on a couple of occasions. In fact we’re off to Miami next month as I’ve just had my most recent scan results and as I’m still stable and currently NED in my liver I have grabbed the bull by the horns! The stumbling block will be insurance. I have just taken out an annual (yes, annual!) policy with AXA PPP who will cover me and my husband for worldwide for £465 which I think is a good price. They don’t ask any questions about health although there is a question about being terminal. When I said that I had secondary BC but it was being treated and wasn’t curable they said that it was fine. They only do annual policies so if you can find a single trip one for less then maybe go with that. I will update (when I can find it!) the travel insurance thread.
...Hi Graceland girl...
I think that you should definitely go if you feel well enough. We enjoy USA and have been several times since my diagnosis in 2012. We do road trips and have a hire car so can - on the whole - do things st our own pace.
The last time we went We had earlyish nights, but were up early. If you can have a time to relax each day and do things at your pace and your friends understand that then you can enjoy it.
I am just finishing my 6th cycle...we have a holiday in Italy booked for May but I have a secret desire to go back to the US later on in the year .... just hoping that the peachy pills continue to work their magic
Having said all that I also enjoy day trips to the coast or nearby attractions... just nice to have something to look forward to
Let us know what you decide
Hello everyone , hope you are all feeling quite well on this sunny day. I've lost count how many cycles I've had of Cape...I might be on my 7th one. I've been lucky that I haven't had any dreadful side effects. Mostly mine are feeling bloated when I've eaten even if it was only a small meal, and not being able to do anything strenuous. I need to sit down all the time. I do get diarrhoea but that seems to make an appearance on my week off ! Because I'm not feeling too ill, my friends want me to go with them and make a return trip to Graceland, Tennessee. Has anyone ventured over the water to USA whilst having treatment ? I asked my Onc what he thought and he said go, and I could take a break from the pills. I'm not sure if I will go as I'm a bit worried to commit mysel....but its nice even to think about it.
Best wishes to you all GG xxxxxxxxxxxx
hi Carolyn and everyone, i have just finished my second cycle so i'll let you know if the skin blemishes go during this week off as my platelets build again. interesting.
hugs to all xx
Hello again everyone. Interesting to read about everyone’s weight gain losses. I lost about a stone and a half on the EE combo which didn’t work for me and gave me dreadful mouth ulcers . I have put about half a stone back on, but ONC still mentions me looking thin. I am within the Bmi range for my height so don’t worry about it too much.
I have intermittent diahrea which usually lasts a day....but it tends to be one or two explosive sessions (sorry TMI) and then I am fine for the rest of the day. Happens every few days and I am trying to see if it comes with any particular food but it seems random. I try to eat little and often, but fitting in with pills and husband - who is a three meals a day man - I have adopted your rice pudding pot for my evening pills, seems to be okay.
I am half half way through my 6th cycle and my fingers are dry and sore but the udderly cream helps.
off to see the GP in half an hour, hoping to persuade him to prescribe me some mild sleeping pills, sometimes I am awake nearly all night, and then off all day. Will see what he says..
love to all
Hunger is something I don't experience. Would be good if it did. Most of my clothes are too big.
love to all Bon xx
Thanks for replying Carolyn, i looked in the mirror this morning and thought oh no now i've got skin cancer aswell. i feel relieved that it's a side effect and l'll talk to the oncologist aswell next time i see him. i scrolled back and see someone, i think Angelfalls wants to compile a list of side effects because our group are certainly finding a lot more than is described on the packet. Glad you had a good lunch, i find Cape makes me hungry and i'm piling on the pounds but,you know, i just don't care, i have ordered larger size trousers from Damart!
all the best
Hello all you Capes, i now have brown and red patches on my face, they came suddenly so i'm guessing they are a side effect of Cape, Anyone else? i look a fright!
hugs to all
Hi Carolyn and George
just back from oncologist appointment, reduction of cape by 20% not sure what that brings it down too, maths was never my strong point!
Apparentley tumour markers are down from 2900 to 2600. Not sure what this means but he said it shows it’s working. Does anyone else have tumour markers recorded my last oncologist never used them, so I’m in the dark a bit.
Feeling more positive today, scan on 28th Jan, results 7th February. Hoping it’s good news then and will then continue on 3 more cycles.
well it’s my 38th wedding anniversary today so going to have relaxing day with hubby. Film watching and chilling I think.
Hope all well with everyone else.
Big day tomorrow see oncologist to discuss level of cape and side effects! I’ve spent the day snuggled up in bed with a hot water bottle as felt really unwell and it’s my week off!
Tomorrow is also our wedding Anniversary 38 years can’t believe it, not sure there’ll. be much celebrating going on. Never mind hope I’ll feel better.
No scan results as that’s not till after 3rd round.
Keep up the good work cape crusaders, it really helps me to hear about others experiences! And I don’t feel so isolated.
Hi Bob,Bel,Carolyn and all on Cape. The only side effect i have had so far are finger tips peeling and cracking and very sore, hospital have prescribed me some cream. i know that Cape is working for me because i have obvious lumps in my neck which are going down, also had blurry left eye, and losing teeth on left hand side, the fog is clearing, still numb face though but that is from brain. it is a drug which seems to work on a lot of people though so worth pushing through. xx
Hi Bon and everyone else
i was very poorly before going on the peachy pills(as Carolyn calls them) but once into them felt better. I’m just about to finish second round, whilst I feel better than I did before taking Cape, the side effects can take a bit of getting used too and managing.
worst for me is fatigue, and dodgy tummy!!! I think it’s a case of getting dose right from what I’ve read on here. However I started on 2150 twice a day, but have lost a lot of weight so hoping that the dose will be reduced and I will find more manageable this week after seeing onc.
im not sure what others think but I far preferred having one dose of chemo every 3 weeks intravenously than all this pill taking!
Im on to 17-18 pills a day now and can’t get my head round it all. Luckily my OH is brilliant and managing me.
Hoping for a nice day today as we are expecting 2 new goats next week, pandora and Tiffany, so need to complete there house today.
Hope everyone has a happy Sunday.
Hi Ramade and everyone else.
We have rescue animals too. We rescued 5 Alpacas, and 2 rather large pot bellied pigs, called Arthur and Bramble. We also have 15 rescued chickens! Alongside these rescued animals we have 15 runner ducks, 3 geese, and two goats called Pandora and Tiffany. We also have a small flock of 22 sheep. 2 rams called Barry and Kevin who we hand reared and now think they are dogs!
Animals are therapeutic but hard work, my OH works very hard looking after them, as I’m all but useless now as I get worn out so quickly. I do partipate in the growing of the veg, as we’ve set up a reclining sun lounger in the poly tunnel so I can take a break any time in there.
The last few days have been a bit up and down, tummy not coping very well and I’ve had to resort to Imodium, hoping that next week my dose will be reduced and things will settle down a bit. I’ve also lost 10kg, so I’m sure this will mean my dose can be lowered.
Interestingly I get the runny nose side effect in the 2nd week of cape! Hoping that everyone is well and side effects in 2019 are more manageable.
Definitley feeling more positive today!
Hi Carolyn. I googled the question and apparantley platelets and neutrophils ‘are partners in bacterial destruction.’
So not exactly the same but they work together..
I get them from a mobile unit one cycle and then from the hospital the next cycle. I have Zometa infusion every six weeks which is at the hospital so they fit that in with my new cycle. They do blood pressure and weight when I am at the hospital, but not when I go the the unit.
I also feel worse on my week off - Nausea, diarrhoea and shaky. Also lower energy levels, still go for my walk around the village but hubby always comes with me now.
As you say things are building up, I don’t know how long before they give us an extra week off, I expect that also depends on SEs
Won’t complain though since I know that others have worse SEs
Hi everyone. Glad to hear Bel that your bloods were okay and that your TMs are better
I start my 6th cycle tomorrow,
had bloods done yesterday and then a phone call from the hospital this morning to say that my neutrophils were too low for me to be given my next cycle.
the hospital is about an hours drive away but we have a mobile chemo unit which comes to our local hospital and every other cycle they let me get my chemo from there
The options were to leave it for a week or to go to the district hospital where they would do another blood test to see if they had gone up...they told me that they were just marginally low...so I decided to go through and have the blood test. It was a two hour round trip but they did the test straight away and the new results were through in about an hour. Thankfully they had gone up to acceptable levels so they gave me my next lot.
They also told me that TMs had decreased again from 122 to 111 so pleased with that
This is the second time this has happened with my neutrophils and I asked if there was anything I could do to make a difference but they said -‘No it is just one of those things’
I have started taking multivitamins and vit c yesterday, and I am on Adcal already so hoping the extra vits will help
hope you’re all back to ‘normal’ now after the Christmas break
Hugs to all
Hi Bel, we have a smallholding aswell and we have rescue animals, i find them really therapeutic, i expect you do too.
al the best
Thank you for your lovely supportive replies. I had my bloods done yesterday and they were ok, my tumour markers were better than they had been, my liver function was slightly worse than before.
Anyhow I feel a lot better, I’ve decided to go dairy free again as I wonder whether that’s making me feel so poorly. I started eating dairy after a 5 year break when I started cape because my calcium levels were so low and I can’t tolerate any calcium pills.
so today I’m hoping for a good day, no anti sickness and less morphine and I hope to be able to go for a walk around our small holding to chat with the animals!
Again thanks for your support, I’m really appreciate it, particularly as I don’t know anyone else on the same treatment as me.
Have a good day everyone.
just wondering if if any of you take any supplements. I try to take a teaspoon of Manuka Honey every day but often forget.
was wondering if vit C and a vitamin supplement would help in these dank dark days. January is my least favourite month
Hallo BRJ, I don't know whether this will help but I was on Cape for 2.5 years. I was on 1800 x 2 a day but my hospital is one of the top specialist ones in U.K. and they had a regime of 1 week on/ 1 off. This kept the side effects manageable but the treatment working. They have vast experience and said it made no difference to success rates.
I do think that some Oncs can be quite inflexible with their treatment regime as they feel safest following the guidelines. I'm sure it's worth a discussion though, it must be better that than having to give up on Cape?
Hello Bjr I am sorry that you are feeling so unwell I agree with Carolyn that the key is the doseage. I am on 2000 x 2 daily which my Onc tells me is a good amount for my height and weight but also leaves room for reducing it if the SEs become intolerable.
My SEs seem to occur at their worst at the start of my week off. Nausea, upset stomach and tiredness, also much more wobbly. The chemo nurse said that it is at that point when we have the most chemo in our system and that the week off lowers it ready to start again.
I would ask your Onc about reducing the dose.
Like you Carolyn I think that it is good that we post our SEs. I also feel wobbly and this is the only time that another person has mentioned it. Strange how comforting it is when we know that others have the same problems.......wouldn’t wish them on anyone though.
I am just about to start my 6th cycle on Friday, so far my SEs are tolerable and TMs are falling so here’s hoping
Thinking of you bjr and everyone else of course.
Hi BJR.....so sorry you are feeling so poorly. I was on 2150 x 2 a day for 4 cycles but felt so rotten..no energy, nauseous and spent most of my time moving from 1 chair to another and climbing stairs was like trying to climb a mountain. My Onc gave me an extra week off and reduced my tablets 20% to 1650 x 2 a day. I think this has helped so far, although this is only my 2nd cycle on the lesser dose. Still feel like my batteries have been removed and still get stomach ache and feel sickly after a meal...but nothing I can't cope with. One other side effect I have is getting very breathless.....oh and another, a continual runny nose .... that seems to upset my husband more than anything ! I think it worries him as I still try and do the cooking ! Anyway, I do hope your Onc can help you and fingers crossed you are feeling a bit better. All the best to you and everyone for 2019.
Love GG xxxxx
Happy New Year to everyone.
im on my second round of cape day 8 but have felt really rubbish the last few days, I’m not sure what to do seeing onc on the 10th Jan after second round completed and scan after 3rd. I’m on 2150 twice a day plus morphine, antisickness, and vitamins.Side effects I’ve expereinced are sore cracked thumbs and feet, even with applying creams, sore mouth and poor appetite and nausea.
I feel so fed up as if I stand up to do anything I feel very wobbly, and unwell. I’m more or less housebound as I don’t ever seem to feel well enough to go out. Energy is nil!i look appalling, I looked at photos taken over Christmas and couldn’t believe what I looked like. My skin, particularly my face is a horrible shade of grey and yellow!
Any advice on what to do would help, I see on here a lot of ladies continue on cape for years, but I’m not sure I could stay on it as I feel it is dominating my life, I feel so fed up and worn out I don’t know what to do.
We have no secondary BC nurse in our area but I have a good palliative care nurse. The chemo nurses are brill too but never really sure when to ring them, as I don’t want to end up in hospital.
sorry for the long post, but felt I just need some friendly advice.