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Rubbish scan results - what next?

7 REPLIES 7
belinda
Member

Re: Rubbish scan results - what next?

Hi again Smiley Happy Smartie, the main side effects seem to be tum troubles, I was ok, I didn't have them but was given some Imodium type tablets in case.

You can also get sore, dry, red hands and feet. My hands were fine. My feet were the main problem, I used to get heel cracks, I recommend silver plasters and Udderly Cream (Amazon) to moisturise,  Eucerin cream (Boots) is another good cream.

I never experienced the crashing tiredness you can get with IV chemo and I kept all my hair. Woman Very Happy Another good thing with Cap is you can get your dose tweaked if it's a bit harsh at first and it is still effective.

I hope all goes well for you with this chemo. And have a great time in Germany!

x

Smartie
Member

Re: Rubbish scan results - what next?

Thanks Nicky, it's good to hear that you are tolerating Cape well and that it is doing its job too! Having had chemo so recently I really didn't want to have a treatment which made me feel so unwell again so hopefully I too will find I can tolerate it. If you do find the other thread that would be great, it's so difficult to find anything on this new forum!
Smartie x

nicky08
Community Champion

Re: Rubbish scan results - what next?

Hi Smartie, so sorry to hear of your progression, I know what it's like! I had bone mets 'only' until earlier this year when a CT scan showed it had gone to my liver. It was a huge shock even though, as the lovely Belinda has said we all expect it at some point once secondaries appear. I have been on Capecitabine since Feb of this year, the first one or two cycles were a bit rubbish and I did have a dosage decrease which I think a lot of patients have as well. Since then I have tolerated it well and it is doing its job of shrinking the liver mets and helping, along with Denosumab, the bones to heal. I have had the added worry of finding out I am now HER positive but not being able to have Herceptin due to a a heart problem caused by FEC chemo however Capecitabine has still been very effective and some of the other chemo regimes you mentioned would also be considered for me when Cape becomes less effective. So, even in my circumstances I know there are options out there. There is a very long thread, posted on the previous forum reincarnation, which has gone quiet recently, that I will try to find and 'bump' up to the top of the latest posts, which now also don't exist!
Good luck with your treatment choice and keep coming back for support and help.
Nicky x

Smartie
Member

Re: Rubbish scan results - what next?

Thanks Belinda (and Helen). I did ask about what would happen if I chose to do nothing so I don't think my onc was suggesting we had reached that point yet just letting me know what the situation is, I guess everyone has a choice about whether to continue with treatments or not.
Since my email I have digested some of the info he has given me (and calmed down a bit!) and think I will probably try the Capecitabine, how did you find it Belinda?
I have booked a train trip away to the Christmas markets with my husband and two friends in Germany on December 2nd for a few days so am tempted not to start the treatment until after then just in case of any side effects.
Thanks for listening x

belinda
Member

Re: Rubbish scan results - what next?

sorry a p.s. to my message, just to say, sorry I was rambling but trying to say we all get inevitable progression but you still have so many options left to try. I have a friend on chemo which her Onc suggested was not really worth trying, it was unlikely to work but it has and she has good quality of life. If this hospital appointment has taken you by surprise and you are not ready to give treatment up yet do get a second opinion. If life is not good I wish you a peaceful and as comfortable times as is possible..Take Care, with Love..xxx
belinda
Member

Re: Rubbish scan results - what next?

Hello Smartie, what a shock for you, I'm only commenting as a patient but I'm quite surprised your Onc is suggesting no treatment just now? When I came off Arimidex, it stopped working in 2004, I had new bone mets, significant number of new bone mets and mets to both ovaries. I then started Capecitabine which lasted well for 4 and a half years. More progression to spinal mets I had some rads and started Doxorubicin which worked well. Now, as a chemo break I'm back on Arimidex and it's started working again, the 2nd time around. I don't know how long I have before I have more chemo but at the moment the hormonal has been working for 4 and a bit months. Good Luck with whatever decision you make, take care Smartie. x

2catlady
Member

Re: Rubbish scan results - what next?

Oh smarties,you must be in total shock with every thing flying around your head. Please don't apologise for getting your worries off your chest.
I can't really give you any advice on chemo as I haven't had any yet. But there are lots of wonderful people on here that will be along to support. Huge hug to you xxxxxxHelen xxxxxxxxxx
Smartie
Member

Rubbish scan results - what next?

After 5 years with bone mets last year I underwent chemo (FEC) for the first time then following further progression at the beginning of this year I underwent my second chemo regime. I finished Abraxane (Paclitaxol) in June of this year and the follow up CT scan showed a good result with reduction in enlarged lymphs in chest. Just had the latest CT scan last week and it shows new bone mets as well as growth in all the lymphs including new ones into my abdomen. Have been feeling pretty ropey and have lost weight so was perhaps expecting bad news but it was still a shock. I cried for the first time ever in front of my onc it just seems to have progressed quite quickly over the last couple of months.
We discussed treatment options and he has suggested one of the following, Vinorelbine, Eribulin or Capecitabine or have no treatment at all. If this was the route I took he thinks I would deteriorate gradually over the next 6 to 12 months (can't quite get my head round that even though we all live with the "terminal"prognosis hanging over us!).
He seems to think that all 3 treatments would have a similar efficacy so I guess I have to consider the impact of them and the side effects, he implied that Eribulin caused the most weakness to the immune system and perhaps considering I only finished the last chemo a few months ago this might be an issue for me.
I have all the info sheets and have been looking on the internet (fatal I know!) and I guess am just looking for any experiences that you ladies have of any of the treatments above, I know I am only delaying the inevitable now but don't want to spend whatever time I have left feeling completely wiped out by the treatment rather than the disease.
Am seeing my own GP later this week and my onc has suggested support from the Macmillan team which up until now I haven't had communication with.
Feeling scared now and fearing the worst. Sorry to have rambled on but it feels better to get it off my chest!