After nearly four years the cancer is back and has spread to primary on t’other side. Started capecitibine or Xeloda chemo feel so tired but can’t sleep. I don’t feel I’ve got the energy to do all that again. Told they can only control it now at the best Finding it hard and find myself wishing I was a dog. Sorry very low tonight.
Anyone around in similar spot?
Hi Aukara, can’t help with advice but sending you a hug you sound like you need one, hope some one else comes along to help.
(((HUGS)))
Hello Aukara
This must be a very difficult time for you, if you would like to talk things through with a member of our helpline the lines open again at 9.00 this morning.
The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
With best wishes
June, moderator
Hi Aukara,
Sorry to hear your latest news:-(
I was dx’ed just over 2 years ago together with bone mets, and then a year later liver mets. And now it’s back again after local rads failed to control further progression.
I’ve just started my 3rd chemo, too, last Friday! Also Xeloda. I’m also feeling tired. Have to get an afternoon nap now to keep me going.
Let’s Hope it works for both of us.
Sending you a hug and just let you know that you’re not alone.
xx
Thanks for your comments, it helps.
I spent four hours yesterday in nuclear medicine trying to get a muga scan. They did try, thought they could do it and irradiated my blood and re injected it but try as they might they could not line up their software with my heartbeat, I evidently have an irregular beat every little while. The scan was to find my ejection fraction so that I can be given herceptin, my consultant won’t accept the electrocardiogram’s
technician giving an estimate of 55% which is only 5% over the line for heart failure or some such, I need the herceptin to cap this thing at least for a while. I don’t know what happens now.
Thanks again for your inputs, I’m falling asleep here so think I’ll go try a nap
Hugs to all
Aukara
Hi Aukura
I’m so sorry you have had this news. I’m also a little surprised that you have been told that they can only control it at best. If the only cancer is the new primary, and you have no spread beyond the new primary, why couldn’t you be treated curatively in the same way your original primary was? Unless I have completely misunderstood the situation, I think I would be asking for a second opinion pronto.
finty x
Hi finty
I was probably unclear, lymph nodes both sides are affected, plus aggressive grade 3. Now started 2nd round of tablet chemo, strangely feel better than I did while not taking it for a week, that was a bad week, one day only when I felt anything remotely ‘normal’. I must stop this moaning but it is good to get it off my chest (wishful thinking that!)
Hope m1u and Tillybob are doing OK
Hugs all round
aukara
Hi aukara,
Good to hear from you. I’ve just finished my first round of Xeloda. The main side effect is still tiredness and sensitive skin. Nap in afternoon and lots of cream for hands and feet. I think it’s working for me (lumps decreasing in size), so that’s the main thing!! My onc did warn me though some people have more side effects during their “off” week… so I’ve been warned!!!
If your diagnosis is indeed grade 3, despite “aggressive” and “lymph nodes affected”, as long as you don’t have secondaries like me (e.g. no bone, liver or lung) involvement, you should be treated curatively - echoing what finty has said. However, because of “lymph nodes affected”, you should at least had a CT scan to make sure (the standards where I live).
Sounds like you are HER2+ (I’m ER+ and PR+ and HER2-), Herceptin would be a good drug for you. It’s a shame if you can’t have it because of your heart.
Anyway, thanks for asking about me.
Hi aukara,
I am sorry that I didn’t spot your thread earlier. If your bc is her2+ and is therefore aggressive you really should be on herceptin if your LVEF is o.k. Some hospitals don’t have the equipment to do MUGA scans so they do echocardiograms instead. I think that you need to explore this alternative and ask to be referred to a hospital that has this equipment to do your scan and get you on herceptin asap. I agree with what the others are saying - at this stage even with the lymph nodes affected they can do far more than just control. Really it may be in your best interests to get that 2nd opinion.
I have had several recurrences from the years 1990-2002 when I developed secondaries. Back then her2/herceptin was unheard of so I didn’t get to go on this until I actually had got 2ndaries but for you herceptin could be what keeps your bc at bay for a long time. Not everyone who is her2 positive has complete success with herceptin, but many do. I just feel so sad that your consultant is not fighting your corner. Go sort them out girl!!!
sending lots of hugs
Dawn
xx