Hi Lesley,
I think that this product would be Ok if you feel like doing it yourself as it does not have ammonia and is permanant. If you copy and paste into your browser it will give you all the gen.
http://www.garnierusa.com/_en/_us/our_products/range-haircolor.aspx?tpcode=OUR_PRODUCTS^PRD_HAIRCOLOR^OLIA^OLIA_HOME
I have stopped colouring mine just now as it very thin and I have got it cut very short. I bought a funky wig to wear when I go out or people visit. I had breast cancer in 2002 though and bleached my hair then – reasoning – it couldn't get much worse. It makes such a difference when your hair is looking nice and you can present a 'normal' looking face to the world. You could perhaps get one of your daughters to help you with the colour. Teenage girls do like to get involved in make-overs don't they. No need to say more about your condition if you don't want – spring make-over is enough. Hope the revamp works out well – it will make all the difference.
Keep well
Love Pat xx
Hi Megan,
Thanks for the heads up! Just put a call in to Ellen and you are right. No green tea from now on then. Will have to find an alternative for when I can't stomach ordinary tea. I am quite surprised that I haven't been told this and will bring it up next time I am in clinic.
Keep well everyone
Pat
xx
Hi Trish and Peter
I am currently on VCD for Amyloidosis and I have very similar side effects to Peter. I have one injection each week for 4 weeks as I could not take 2 each week. I have treatment on Tuesday and by Friday I have a cough which recedes by Monday, ready for the next round. I am very tired and have little energy and stamina. The Dex gives me two decentish days on Weds and Thurs and I make the most of these to get things done that I haven't been able to do the rest of the week. Taste is a problem and I drink green tea with ginger and lemon on the days it is really disgusting. I sometimes have to take the anti sickness tabs to let me eat but that is not all the time. It has given me PN in my hands and feet as well. But – and this is a big but – blood results say that it is working:-D . PP's down from 133 to 33 and kidney function improved to 47 so I am really not complaining.
I think it makes it easier to cope with when you recognise the pattern and ' go with the flow'. It's hard enough to fight the disease without trying to fight the side effects as well. Hope that Peter's rash is just that and not shingles. I have been on Aciclovar since the start of treatment to prevent that. Hope things improve for you both soon.
Keep well
Pat xx
Beatrix came home today! And what is more I had a most wonderful 30 minutes on face time with my daughter Jess cuddling her at home. I just wanted to reach out and hug them both. So nice to see them out of a hospital environment. On cycle 5 VCD now so only 3½ more to go before I can go to Canada!
Keep well everyone
Pat
xx
Wonderful news:-D Welldone you two. Long may it last.
Keep well
Love
Patxxx
Hi Jo,
Can't see any reason why you can't have your hair coloured. If it makes you feel better why not? Worse thing that can happen is it all falls out and then you can get a funky wig:-D Mine is still thinning at a rate of knots, Kev says I will have to go outside to brush my hair soon as the fallout is getting so great (cheeky b*****r)I have found that the Elvive Oil really helps it to look better though – not so brittle looking if you know what I mean. A little retail therapy came into play yesterday and two new tops boosted my mood no end followed by a little bingo win (my Friday night catch up with a dear friend)ended my week beautifully. All I need now is for my broken little toe, the result of making the bed last Saturday with no shoes on and PN in my fee:-S t, to stop hurting (now the dex has worn off) and life would be peachy:-D
Love to all
Pat
xxx
Oh Dai,
That is so lovely. It even makes the Dex dump I have today seem better. Thank you.
Love
Pat
xxx
So pleased for you Tom. Long may it continue.
Love
Pat
xx
Hi Jean,
Just had to say I love your new photo! I can't wait to have a similar one taken but will have to wait until treatment is over to go to Canada for that. My daughter says I should come now and stay with Beatrix in the Neo-natal unit then I would be with her, be infection free and still have treatment. Not sure my bank balance would be able to stand that! Hope Angela is OK now and everyone is just enjoying the new man in their lives.
Love Pat
xx
Hello Dai,
I just wanted to say that I find your posts most informative and very easy to read. Although not directly relevant to my condition (AL Amyloidosis),because the treatment is so very similar I do find a lot of information on this site very useful. Not to mention the general upbeat nature of the people on here who really make what is a very difficult journey at the best of times, understandable and bearable to say the least. God bless you all I say ( I sound like Tiny Tim don't I?)
The fact that ordinary people can explain what is happening to them in language we can all understand and for us to be able to read and absorb the information when not stressed at a consultant meeting is so very helpful.
I follow all your stories and cheer you all on (silently as I do not have much to add except encouragement)but support is support however it reaches it's destination.
You can probably tell from the time that this is a Dex high for me today which means that I will be catching up on all things domestic before I crash tomorrow. At least by now I know the pattern and can plan things around it. I am on VCD cycle 4 of 8 and am very anxious to get the treatment finished as I want to go to Canada to see my new (and first) granddaughter Beatrix. She is growing well and weighed in last night at 3lb 8oz. I will be there before her first birthday! Hope your new arrival is doing well as are you at the moment. The fight is worth it and it certainly does seem to be to going in the right direction.
Keep up the postings Dai – I for one really look forward to following your progress.
Keep well
Pat
xx
Hi Ozzy,
Sorry to hear about your reaction to Velcade. Although I have Amyloidosis the Velcade treatment (VCD) is very similar. I started off on 4 treatments over two weeks and then one week off and also ended up in hospital. The reduced frequency to one every week over 4 weeks has proved to be managable, but you should have some medication for the sickness. I still get a sicky feeling occasionally but no actual vomiting and the tablets are always on stand-by just in case. I also get constipated but find Fibogel manages that OK. Hope this helps – have a word with your consultant. I am sure he/she will be able to help.
Keep well and fighting
Pat
xx
Good old retail therapy – works every time. I havn't been able to get any shopping in this weekend so far, but maybe later today. Red velevet sounds very luxurious Jo – well done you.
Keep well
Love
Pat
xxx
Oh congratulations Dai. Isn't it lovely? I have been shopping on-line this morning and it feels so wonderful to be buying all these lovely little clothes for Beatrix. I love being a grandma!
Best wishes to your son and daughter in law, they must be over the moon as are you and your wife no doubt.
Love all round then!
Pat
xx
Thanks Jo. I thought you only felt this much love when you had your child, but my goodness, it is just as strong with with your grandchild isn't it?
Had a bit a set back in my treatment – a virus which affected my liver function stopped treatment for three weeks but started again yesterday and have been feeling a bit off today. Better tomorrow no doubt. You havn't been having a good time lately though have you? Hope you are over your infection now and feeling better. Up and down as per normal eh? We will have to think about going shopping to buck ourselves up a bit. Having my hair cut tomorrow as it has started to thin quite drastically and hoping to have a cut that will disguise it should it get much worse. Fortunately I have very thick hair so I think I may be OK but will have to leave off colouring it for a bit and let the grey shine through!
Keep well Jo and keep in touch.
Love
Pat
xx
What a lovely little boy, congratulations to you all. I also had good news on Saturday. My daughter and her wife in Canada signed the adoption papers for baby Beatrix born 19th December 2012. She is tiny weighing 2lbs 12oz at the moment but is breathing on her own (still has extra oxygen though) and is feeding well. This is my first grandchild and I can't wait to go to Canada to actually see her in the flesh. That of course may be some time away yet as I am only just starting cycle 4 of VCD for Amyloidosis. Thank goodness for an i-pad. Loads of photos and videos comimg every day so makes me feel that much closer. It has given me such a lift at a time where I was feeling quite down. I am sure these things are planned by a higher power!
Hope everyone is keeping well.
Love Pat
xxxx
