Hello Helen, I am so glad they have got to the bottom of your breathing problem! I had a DVT back last October, and have had to give myself a Fragmin injection every day, and have been told I will have to do that for as long as I am on chemo (and blood thinners of some sort for the rest of my life). If I have another break from Cap (or any other chemo I might have to have later), I can change to an oral blood thinner - although Warfarin is not possible as it and chemo don't get on. The injections are OK to do myself, but, as you have mentioned, the bruises are spectacular! And it stings! I hope everyone else is coping ok, and having minimal se's. Hugs, Barton.x
Just wanted to say, good grief Helen! Your ONC needs a kick up the backside. Thank goodness you were seen by someone sensible. Blood clots in the lungs can be extremely serious. Hope you feel more comfotable soon.
Great news Mavis!
Good thoughts to everyone having scans, getting results, or just feeling rubbish this week.
Hi Everyone, after a long wait for appt with Onc re my Scan, the news was good, everything on the screen was almost the same as my scan 6 months previous and my cancer markers are down from 1600 to 600, so yipee something is working!!!I went in expecting the worst as the pain in the ribcage is quite bad, I fairly skipped out of his office.The brain was not scanned, I have some nasty cells in the meningual space above the brain and lately am experiencing quite a problem with Tinnitus,I meant to tell the Oncologist about this but as he delivered the good news, I completely forgot, hoping that the drop in my cancer markers means that the brain is stable as well. Capecitabine seems to be helping me, even though the dose is lower and taken over a longer period. I have more energy and am back out and about socially and braving the "bugs", feeling something of a fraud being the subject of so many prayer groups and countless cards and flowers, for this "dying" woman. Long may it carry on, reading your comments and advice has been so helpfull Thank you all so much xxLove and Light xxMavis
I am so frustrated with your onc! You should be having an emergency scan with all the pain you are going through! Hope you get one very soon and then onto a better treatment.
Hi Chocolates, I'm not bad thanks. Going for my scan at 5 pm today. Onc is including a scan of my head as I have watery eyes which are very uncomfortable especially if I try to read or watch TV or even use my computer to send a post. He doesn't think anything will show up as he thinks it may be the chemo or the high calcium. (They can both cause this problem apparently) my calcium is normal now thankfully. I will see him next week for results.
How are you? Are you still busy at work? Soon be half term.
Hope everyone is doing OK. I am going to watch panorama now with a cup of tea. Got to make sure I am hydrated!
Love to all of you. Like someone said, we feel that we know each other even though we have never met. Sheila xx
Helen was just going to suggest you email your Onc so am pleased o see that is your next step (well done tracking down email, it shouldn't have to be this hard!). Just make sure he understands you want to try to get funding for eribulin before it goes so you have another drug left in the armory for later, you could even tell him you know of another patient at that hospital under a different Onc who is being fast tracked to reach cut off date. We all hope you are stable too but you need to know that your Onc has things in hand if you are not. Keep badgering, it's horrible I know but sometimes the only way to get action xx
Oh Helen, I cant believe your oncologist. My friend has recently started erubulin and after initial couple of doses it is showing real promise. They got the go ahead from the CDF in a couple if days so it doesnt have to take long. Can you not ask for earlier telephone consultation to give you a chance to get the drug if appropriate? Keep pestering, hugh hugs, keep strong lovely lady.xx
Hi Desi For Cape just drink loads (doesn't have to be water). Hope you have got plenty of handcream and foot cream in for the SEs and (in my experience) a load of Rennies for heartburn!
I work full time and am out of the house 12 hours a day and am on Cape, so it doesn't have to be too awful!
Woo hoo bertie! Sounds like you are all set up for a great reunion. We'll see you when things have settled a bit and you have some time free. Enjoy!
Helen I agree with the others something needs to be sorted, you cannot go on with this pain plus they need to be pressured to get your scan sorted so you stand a chance of getting in before CDF stops.
Desi sorry to hear you had a difficult time yesterday with scan. Hope whatever you've picked up passes quickly and blood testscome back ok.
I had BCN all the way through my primary but with secondary dx there were no secondary specialist nurses and none of the BCNs wanted to take me on, I asked who my named contact could be - mmm maybe try the Oncs secretary.....
Hope everyone waiting for scans or results get the outcomes they hope for and those on treatments have minimal SE's. Have a good day girls.