Back home already. Got my infusion of Zolidronate and I have now to sit by the phones for a call to tell me when they can fit me in for both a blood transfusion and to start Taxol. ( Ony thing that is odd is that my TMs have gone down in the last 3 weeks!) so perhaps the peachy pills were stil working for me after all!!. But going ahead with the Taxol. (Unless they decide otherwise. But I do not think that they will). My lasagne cooking in the oven ( made it weeks ago when I made 2. But ate one and froze one for times such as this). So chilling for the rest of the night. Think a glass of red wine might be rather tasty wiht the lasagne. Red wine is good for your hb after all! May even have more than one glass. Love to you all. Will still keep popping in to see how you are all doing. Love Val
PS My husband has just poured me a large glass of chiled cider…oh wel that wil do to start with!!
Louise - sorry you’ve had to change chemos so soon. I did FEC-T so have already had Epirubicin. It does take some used to with the red pee, but apart from losing my hair the only real problem was now having crap veins, although I’m not sure which of the drugs does that.
Val - hope your blood transfusion helps. I think you’ve probably made the right decision not to wait before changing chemos but can see why you’d be wanting to have a normal Christmas first.
Nina - sounds like you’re doing really well on the peachy pills.
I got the phonecall this morning to say I can have my Blood Transfusions tomorrow morning. I asked again about starting Taxol and she said she was working on it. So may hear something tomorrow. STRANGE thing is…I had my Tumour Markers done 3 weeks ago and the Consultant saw those. When I went on Monday to the GPs Pracice I asked the nurse to add my CAE and Ca125 Tumour markers for testing ( I did this because I wanted a true base line if I was starting up a new chemo regime) and would you believe it those bloody TMs had gone DOWN quite a bit. Just shows you how much they can vary. But still going for the Taxol as planned.
Hope those peachy pills still do their magic for everyone. Love Val
Val - I asked onc last time about TMs and she said they weren’t vey reliable for BC. As we have the same onc it’s interesting that she seems to be relying on them for you. Hope you feel better after transfusion and you can get started on Taxol soon.
Gail, she has said the same to me BUT when on chemo they are a good indication on how things are working or not (for ME). She also takes into consideration other factors such as my recent MRI and CT scans and the fractured rib I did not know I had and the two cracks at the top of my spine near the base of my neck, and also the recent fractures on my thigh. So she won’t just rely on the TMs on their own but also takes into consideration how I look, how I am feeling and the other tests I mentioned. The strange things is that my TMs actually IMPROVED a little after my very last chemo. I have not seen her since I got this result. I asked the GPs practice to take them so that I woud have a starting point before I start Taxol. So perhas there was another reason for my raised TMs. The are not that helpful sometimes but FOR ME when I have had chemo before the TMs always reduced when I was on my chemo. We are all different and for months and months I did not have any TMs taken because there was not need. Hope this makes a little sense as it is hard to explain when your head is mince! Mine that is.
Not feeling the benefit I thought I would feel with this latest blood transfusion. Hope that in the next few days I will notice an improvement. The hours it takes in the ward makes me tired so I am hoping it is just that. I arrived at the hosp at 10am but did not get home until 5 30pm and we live fairly near the hospital. Not like one chap who had travelled all week from South of Jedburgh but was so tired that day his wife and him decided to stay in a Travel Lodge as he had to back up the road again for his radiotherapy the folowing day as no machine in the Borders General. I am so luckly to live near such a great hospital. Val
Val - I’m also glad I don’t live much further away from the WG, although tramworks are a pain to get round. I expect the long day in hospital will have taken it out of you too. It’s amazing how exhausting it can be just waiting for treatment. At least it’s good the TMs have come down again.
Back from onc appt. I’ve been a bit concerned that some skin mets seem a bit bigger (but could be due to having more feeling in finger tips since dose of Cap reduced or anxiety over reducing dose making me think that). Onc thinks things are still relatively stable so will keep me on Cap for at least another couple of cycles before reviewing again.
Hi Ladies,
Seen oncologist last Thursday - worried after having two reductions and increased pain. but I think I have cancer of the pleura and they it doesn’t like the cold. Anyway I digress, the bone scan and was clear which was a relief phew. The CT scan show that everything was stable so Capectibine is still doing it’s job yippee.Just a shiow about my rubbish hands and feet but it’s a small price to pay and if its working.
Hope you all are coping well with cap and the side effects are kind to you - so keeep creaming.
Love and hugs
Chris xxxx
Chris - good to be stable. I’m now being less bothered by HFS now on reduced dose and look at it as a sign that drug is getting through my system.
Great news Gail I’m still having problems with HFS but cream and trying alsort of creams. My onocologist did ask me if I wanted another reduction and I said I’m coping at the moment but obviously if it get any worse then I’ll have to reconsidered. She said she thinks I have to think of quality of life but i doesn’t stop me from doing anything so I carrying on as longer as it’s working I’ll keep creaming.
Oh and oncologist gave me some cream to try its called epaderm cream; well I’ll give it as shot as I don’t have anything to lose and you never know.
Take care
Love
Chris xx
Hi just to say I am also suffering with HFS syndrome on cycle 14 of capcitabine. It was particularly bad trying to walk about on hols. I am using flexitol heel balm. But the thing which is helping the most is moisturing and then putting cling film around my feet at night with socks on top…im also weaing plastic gloves on my hands at night…lightweight disposable ones.Each morning my hands feel normal but gradually deteriorate a bit during the day…ditto my feet…dont know what the cabin attendant thought on hols thou…moisturizer, cling film and plastic gloves…seems like perfect gear for strange sexual practices! It does helpa lot with HFS though and I think would magnify the effect of any moisturizer…Do go carefully if walking to the loo at night thou cos your feet slip around a little on the cling film. pamx
Chris - look forward to hearing about whether the epaderm is useful. Is it available over the counter or do you need a prescription for it?
Pam - you did make me laugh. I’ve been advised by my unit to wear cotton gloves at night, but as I often need to go to the loo (SE of drinking so much water to flush through chemo) during the night decided it was too much bother.
Hi Everyone,
I have read through the posts here. I am only on day 3 capecitabine first cycle but I am still confused when to take omeprazole. I was prescribed omeprazole to protect my stomach as taking naproxen which works well controlling the pain from bone mets in spine. At the moment I am taking cap with breakfast then waiting two hours to take omeprazole and naproxen. Not sure if I have to take omeprazole and naproxen two hours before cap and breakfast. I really want capecitabine to work as I have had extensive spread from 3 small bone mets on spine to Mets on nearly all my spine in a few months. Letrozole suddenly stopped working … Exemestane and faslodex seemed to promote bone spread within 4 months. I believe receptors must have changed. I start herceptin next week . In meantime I need to get my head routho when to take these meds.
thank you all so much xxxx
Lovelyday - I was previously on Omeprazole with Cap and took it twice daily, last thing at night and first thing in the morning, allowing about an hour before taking Cap pills in the morning. Now I’m on Lansoprazole instead and take it about an hour before breakfast, then take Cap pills immediately after. Onc thinks that is fine. Not on Naproxen so can’t help with that one. Do you have a SBCN you can check with?
My wife now 42 was diagnosed with primary and secondary triple negative BC Feb 2011 RH breast and various lymph nodes and lung mets. Since then she has been on almost constant treatment and finished GemCarbo end of September which put things on hold but within weeks of Gemcarbo ending it was active again.
She is in quite a lot of pain and is on Zomorph, Oramorph, Amitrityline and pregabalin this does the trick for so long but then has to be increased so our oncologist is hoping that the Xeloda reduces thing thus helping the pain we are also fortunate to have a good palliative care team we try to remain positive.
My wife started on Xeloda on Thursday 13th December 2500mg twice a day so far she is v tired middle of the day but is keeping her hands and feet moisturised. This thread has been so helpful to us, thanks to all and I hope you don’t mind a bloke dropping in from time to time.
Best wishes to All of you wonderful ladies.
Hi wellmeant , what treatment has your wife been on already ? I think she will find xelook ok. eat little and often and ginger beer helps with sicky feeling. Take care
Wellmeant - sounds like your wife is on quite a high dose. I had mine reduced slightly recently from 2000mg to 1800mg twice a day and on the hiigher dose I was tired in middle of day, but am now much better. Still find it hard to get up in the morning, but OK rest of the day usually. Your wife might get her dose reduced as it sometimes needs to be tweaked a bit.
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To Pinkylou: My wife started in Feb 2011 with Epirubicin (90) and Cyclophosphamide in 6 cycles, worked for 3 months then next 3 didn’t - Radiotherapy 20 treatments, short break the rads seemed to have worked but within weeks the C got going again. Then tried Taxol and Avastin on the BATMAN trial this didn’t work then on to GemCarbo from April to October 2012 (hammered her bloods) kept things static but after two weeks break C got going again and now on Xeloda
thanks wellmeant , your wife must be very tired , how old is she ? I have done alot of the same has her , but I did taxol and avastin first then xeloda , going to start epirubicin or halaven . How big are your wife’s lung mets , does she still work. Does she still have the tumour in her breast , his big is that ?
Hugspinkylouise