Help!!!! Has anyone had this problem. Only been on it a few months and brought markers down to 3!!!! Last blood results markers have risen to 692 so it’s gone up quickly. Anyone know what treatment is available when this stops working. I’m so stressed and worried
capecitibine not working: Help!!!! Has... - SHARE Metastatic ...
capecitibine not working
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Hm50
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Hi! I was on Capecitabine and it stopped working after seven months. I think it’s the average time… Is progression confirmed by scans? Markers aren’t totally reliable. I’m now on IV chemo Caelyx and I’m doing fine.
apparently my scan showed tumour in liver had a reduction and bones were holding stable. I see oncologist on Thursday and I’m praying that the progression is only showing on markers. I’m so scared and hoped I didn’t need Iv again as the last rounds collapsed my veins and I needed a Hickman line. Have you got any side effects off your chemo? How long have you been on it? Sorry for questions
your markers jumped in a very short time. Could it be an infection? It’s hard to believe such a rise is connected to cancer
I don’t feel like I have an infection. I had a chest infection back in December and was took off my chemo tablets. Markers showed a slight increase beginning of January to 192 but three weeks later the huge jump so not sure. I’ve done two full rounds of chemo since the rise to 192
That is what I was told exactly from the oncologists at the cancer center I went to. None of the oncologists used tumor markers bc they said they fluctuate and many times it is not because of the cancer. So I never asked and never knew.
hi. My oncologist uses ct scans more than markers and has been on phone saying that the scan was showing good results that I had done beginning of January and she says she needs to put last two scans together to check they not missing something. The treatment had markers down to 3 so it was definitely working in November then in December they rose to 192 within 3weeks. I was unaware of the rise as you cannot get markers from hospital they come from our general practitioners. I had a nasty chest infection beginning of December so had to be taken off chemo while I cleared it then I was rushed to hospital a couple of weeks before Christmas with a pulmonary embolism and kept in for three days. At that point I was again removed from chemo and started on blood thinning injections twice a day. I then came home and ended up with yet another chest infection so again after a couple of days I was taken off chemo. Two cycles later the markers have risen to over 600 so they have risen dramatically over around 6 weeks. I’m now wondering if it’s something to do with blood thinning injections that are causing this due to results of scan.
and what’s your oncologist’s opinion? If scans are clear or show stability on what basis do they change therapies? Did you have a look at liver enzymes levels in your last bloodwork?
Oncologist has just rang and is saying she doesn’t understand the quick dramatic increase either but is going to compare last two scans and get back to me but at minute she wants me to carry on with treatment. I’m not sure about liver enzymes as I haven’t seen her face to face to discuss that. She is also arranging another ct scan to check again what’s happening. I’m so worried
I think that's a good sign she wants to carry on with treatment, could be the gaps that allowed rise and often when you tart restart there is a rise before drop. When capecitabine stopped working for me I was put on weekly paclitaxel. Had 23 doses, missed one because I'd been sick.
Thankyou and I’ve done two courses while it’s been rising so fingers crossed it starts to drop. How was paclitaxel when you had it?
Hi, I had my 24th dose yesterday. I get it through port after first 2 via peripheral iv so no dramas there. I think the premeditated they give to prevent drug reactions makes it a bit difficult to sleep 1st night, the dexamethasone in it. As far as side effects from pacli go, am just starting to get a bit of peripheral neuropathy in a few toes. I get a bit tired but I go work 3 days a week and do all my housework, catch up with friends etc. Not been neuropathic on the pacli. Oh... and a lot of my hair fell out and grew back as weird fluffy whie hair so it is clippered short and I wear a lovely, very expensive hand tied human hair wig.
hi there. just wanted to mention that when my hair started growing back after chemo in 2013, my hair was coming in as white, fluffy, weird hair. I went and had it shaved off with a straight edge razor and started from scratch. I had nothing to lose...lol. anyways, it grew back like my natural hair and is now long again. you might want to give it a try. so nice you found beautiful wig. carole XOXO
I know you were asking another lady, but I seen the question after I replied to you earlier and I will paste it again (if you are interested).
"I was lucky as my cancer center two and a half years earlier, now put the CT scan results on my patient portal the same day or by the next morning so I could see it before I even went to see my onco to discuss so that was good for me bc I knew what was going on to a degree, and could write down a question I would have for her. I usually had a CT scan and within two days my appt. with my onco. I am in the US and they do it very quickly. I liked it so much better to see it in person myself.
Even my onco did not understand the language the radiation doctors use, so basically there was a finally summary at the end of the report that explained it in layman's terms."
Hi Hm50
I was on Cape for a short period, 1st MRI showed great results even onc was pleased, 2nd MRI my liver wasn’t mentioned but lymph nodes and a mass in my chest showed progression - shock horror after great 1st scan!
The recommended switch was taxol but I managed to persuade onc to let me have chemo pills instead. Cape was great for me, the best in how I felt and functioned, I was so upset to leave it. I’m trying my best to avoid IV, but this will probably be my next treatment 😔
I know how worried you are, I felt the same only 4 weeks ago, I hope your new treatment plan is put into place soon. Take care!
Nx
Hi. Sorry for the questions but did they give you a different chemo pill? I’ve already done Iv and it was awful so I’d rather not go back to that but if needs must I’d have to. How long did you manage on cape? I’ve got liver and bone and according to oncologist it’s shrunk the liver tumours and kept the bones at bay so don’t understand the markers flying up. Take care. Helen xx
Hmm we are all so different. I much refer taxon to Cape as I hated hand for syndrome. I have port so iv not a problem
If you don’t mind me asking… have you lost your hair? I love to work and travel and I just felt like I would lose all that on taxol. I’m so encouraged that it’s your preference, I guess never having experienced IV it felt like a lot to take on all of a sudden!
I just found the freedom Cape & the meds prior all gave me was great - a month at a time. Even though I had foot issues on cape, it didn’t stop me from being mobile, I just feel taxol would make it ‘official’ to everybody what I’m living with and stop me from travelling…crazy I know right! It’s my next treatment so I know I need to accept it😔
Nx
Yes unfortunately I lost all my hair which is growing back now a year later. It’s coming back curly and grey which it wasn’t before but at least it’s coming back. I lived wearing hats even round the house cause I hated the fact that people could tell what was wrong. It made me really anxious and depressed at the time. Side effects were tiredness sickness but apart from that it wasn’t too bad. Helen xx
Hi, yes totally understand about the tie to weekly treatment. If I'm still on same treatment in July (our winter) I'll probably skip a dose or delay it so I can go skiing. I had heavy duty FEC-D chemo 6 years ago and with that my hair came out completely in about 3 weeks but with this it didn't fall out til about 4 weeks and didn't completely go, say about 50%. Maybe if I spent a fortune for cold cap I would have kept more but I think it would bea wig). too thin to look good. So I am happy with the good quality wigs (long for at home/ out and just above shoulder for work in same colour because I have to have hair tied up for my work and that just doesn't work well with a wig). Noone knows unless I tell them. Good luck whatever you decide to do! ♡
Thank you, so encouraging.. I think I’m going to look into human wigs before I need them. I really don’t think I can function without hair - love the fact you have 2 😊 You also mentioned 50% of your hair fell out because you didn’t cold cap, is it something you wish you did?
This has been the toughest part of my journey so far, and I know I need to get a grip! I can count on 1 hand the people that know of my diagnosis, I’m 55 and people think I’m 40, I’m always happy, always upbeat- I know once I look like a ‘cancer patient’ I’ll be spending huge amounts of time and energy consoling others and assuring them I’m not dying just yet 😩… I’m exhausted just thinking about it!
Tc Nx
• in reply toNtash01
I feel the very same way as soon as the hair goes it’s official I have cancer . I have been dealing with this for 10 years and I still get this feeling , you are not alone.
Your fears are exactly why many bc oncs do not order tumor markers! Things other than cancer progression can cause them to rise, and they aren't reliable for everybody. How we feel, what our bodies are telling us, is the number 1 indicator of how we are doing!! Scans next. Tumor markers are a very very very distant third, and the most they do is suggest it's time for scans. You have liver mets, so how is your liver function (in bloodwork)? I'm a long timer with MBC, 19 year anniversary coming up 3/1, and have gone to alot of bc conferences. Learning all I can has bbeen one ofo my primary ways to cope. i really don't think you need to worry. I hope that a year from now you will look back at this and know the worry was misplaced!
Hello,
I’m sorry you are feeling so stressed, hopefully your doctor can help alleviate some of it when you see them next. I only got five months out of Capecitabine before my CT scan last week showed progression in the liver. I believe Enhertu is next for me (I’m low Her2) but will confirm this week when I see my Oncologist.you are not alone! I’ve been upset as I wanted more time with these drugs. Hopefully the next line of treatment will give us years. 🤞🏻
I was just taken off Enhertu after almost 9 months due to ground glass opacities in my lungs. And it broke my heart. For me, Enhertu was a true miracle drug--my cancer numbers plummeted--and had almost no side-effects. Now I'll start Xeloda in a week or so and as I look at the list of awful-sounding side-effects from it, I'm really worried. Which is why I'm here reading today...
I know, me too! Chemo 12 years ago was horrendous. I have been told that they give us much lower doses in the metastatic setting. I do imagine all the cancer melting away in the liver.
Please read my post about switch to Taxol after Capcetibine. Changing drugs is always stressful but I must tell you it has not been that bad and the port is so easy. I think the hardest part for me is that now I look like I have cancer whereas I did not have any visible signs before. I am looking to probably change again soon so I am grateful that we have so many more options than we did even a few years ago. We are here for you.
Thankyou so much it’s reassuring to know that people are here for each other
Hi - thank you for giving your experience on Taxol, you and another board member have given me so much encouragement.
May I ask what medication is next in line for you? How long were you on Taxol for? I know we are all different, but my onc used the words indefinite- bad choice of words even though I know how this is how it works!
Nx
hi. My oncologist has left me on cap for time being as she thinks the rise in markers is due to me having a pulmonary embolism before Christmas. She had pulled forward my ct scan so it’s now end of March and I see her two days after that. Just praying that she is right and everything can stay the same for a while yet. I have been on cap for around ten months at minute and hoped for a lot longer but yes we all know how this works for us. Helen xxx
I am told we will consider Enhertu next
Same here. my markers went up from 70 in May of last year to 600+ currently on cap. PET CT scan showed stable in Sept 2022, but then from the PET in Dec 2022, extensive bone mets. Now on 3cycle of vinorelbine. Just waiting for blood test to see if the first 2 are working. If it does not work, I too will be back on IV chemo.
it’s awful and so worrying. I’m off to pick up meds today from the chemo unit and I know I’ll be in tears with the nurses in there when they ask how I’m feeling. I’ve hardly slept in two days and just want to know what’s happening. Hopefully your blood results will show improvement and you can escape the dreaded Iv chemo. Take care. Helen xx
Hang in there. I get so upset too and people just ask how are you doing and don't expect us to say, "terrible, have you got an hour"? As if we are going to pour our guts out. I would like to reply, How do you think I am doing?! I had taken my 4 pills (vinorelbine) last cycle and they caused so much havoc with my digestive area that I was literally curled up with so much pain. FInally I asked my doc yesterday if I could spread the pills out, like take 2 in the morning and 2 later in the day, so all 4 would not be so toxic at once and he said in a confused state, we can try. Duh? I stated that I wanted to make sure that they would still be as effective. So I did just that yesterday and I have had no problems at all and no bowel issues either. Still waiting on tm's, as those were not urgent. Blessings xo
yes I know how you feel when people ask how are you. I don’t think anyone knows how you feel when it isn’t happening to them. It’s awful when you try and explain and they still say “it’ll be fine”!!!!! I have to bite my lip before I scream at them that it won’t be. I restarted cape last night and felt really sick. Think I’ve slept 13 hours but I suppose it’s been catch up off two days of hardly any sleep. I spoke to chemo nurses yesterday who are going to try and push for some possible answers for me so I’m sitting by phone waiting for it to ring. I’m pleased you’ve managed to sort your meds and pray they work for you. Take care xx
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