Well we are kinda back to square one now. Being referred back (from RMH) to local hospital for (probably) Letrozole.
Since diagnosis (Oct 2010) she has had 4 different lots of chemo but just cant get rid of it or have a decent period of time in 'remission'.
Cant do a trial because blood sodium levels are too low (possibly, they say, a damaged kidney) so back to where we started - and waiting for an appt to see Onc to get prescription for 'whatever' and hope to god that helps.
In the interim, while its working (or not) we will try to find out exactly why the sodium levels are too low, as it stands every test cant find a reason. So we will endeavour to find out why, get it sorted, so if necessary she can go on a trial....
Naturally she is very low and worried that its the beginning of the end, and maybe she is right, but we fight on and hope and pray that soon we get some positive news that gives fresh hope.
Because we expected todays outcome i have arranged, without her knowing, a trip this weekend where some of her family are meeting us....so that will lift her spirits.
I will update anything significant - but i, well we, want to say thanks for those that have taken the time over the past months to offer support and advice....may you all continue to be positive and receive positive news.
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thehusband
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I am so sorry that you both have had it so bad, my thoughts are with you both, please keep us informed, your update is appreciated, My thoughts and prayers are with you, and best wishes for this weekend love x G x
What a brilliant idea to arrange a cheer-up party! I am sure she will feel so loved and supported.
I am sorry that things are not going better with your wife yet. About the sodium levels, my Mum always had low sodium levels after an op and her GP told her to eat at least one pack of salted crisps per day. She said it worked better than any medication she had found in her experience ....may not do the kidney any good, though, so do check first.
Hope things will soon turn a bit better for you both.
Have a lovely weekend, and keep praying and wishing, which we will join you in, I am sure.
Love Wendy xx
what a wonderful man you are arranging such a lovely surprise weekend. All these knock backs are hard for you both. I hope that you have someone to lean on too. The Letrozole may give your wife's body time to regroup after the heavy onslaught it has undergone from all the chemo in such a short time, so don't look on it as a step back rather as help to maybe bring all tose levels back up to normal to continue to fight in the future with greater strength.
I'm really sorry you're both having a dreadfully tough time of it. I do hope the surprise treat at the weekend goes well and lifts both your spirits. I think you both deserve this.
I don't know if this is any help at all but I'm looking at a consultation with a clinic in London called 'Leaders in Oncology Care' who look holistically at supporting patients through their journey. Another port of call I've heard is extremely helpful and supportive is the Penny Brohn Clinic in Bristol. Chapel Pill La Bristol BS20 0HH - Tel: 0845 123 2310. It may be worth giving them a shout as you both need some extra support at the moment.
Keep hoping....I have had two rounds of chemo which didn't keep my CA125 in check and I went on Letrozole in October. At my 3 month check my CA125 is the same as it was when I started Letrozole so the doctor believes it is keeping me stable. Enjoy your weekend.
Please don't think that because you have not got rid of the disease or had a decent remission, that this means you are at the beginning of the end. Your wife may be able to tolerate her current predicament for much longer than you think. I have not had any chemo for 3 years and whilst my scans show the disease is progressing, it is not affecting my day-to-day life and I am otherwise fit and well. I am technically not in remission, but I am living a good life with cancer.
You have said before that your wife otherwise feels fine and I do hope that this is still the case and continues to be for a very long time. I think the family weekend is a wonderful idea and just what you both need right now.
I'm so sorry to hear your bad news...seems so much of it at the moment. You sound like a wonderful supportive husband, what a lovely thing to do for your wife, I'm sure she will love it.
Hope you both have a lovely weekend, please keep us posted.
I have been diagonised since Aug 2008 had the big op the same as your wife usual chemos 4 times ca125 always high in the thousands, I have been on letrozole since april 2012 and feeling fit and well, although my ca125 is still rising slowly its not rising as quicky as it had 1month after i finished my 18 weeks of taxol I hope the taxol works for your wife enjoy your break away. Jan
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