Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Feb 3, 2008 21:15:20 GMT 1
Hi Daisey,
I'm so pleased that you had a good weekend with your daughter and your grandchildren, I'm sure it done you and Bob the world of good. I think sometimes its nice to be surrounded by loved ones as if only for a short time it can distract you from what your trying to cope with ((hugs)).
I'm glad to hear that Bob is sleeping well.. how about you, how are you doing?
Sending much love to you and Bob, take care.
Love and ((hugs))
Vicky xxxxxxxxx
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caz
New Member
Posts: 25
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Post by caz on Feb 3, 2008 21:43:35 GMT 1
Hi Daisey, Glad Bob is doing well on the Tarceva, and you have had a good weekend, these tums are a right problem arn't they. Have a good night both. Caz XX
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Post by Deanne Jenkyns on Feb 3, 2008 23:29:02 GMT 1
Hi Daisey, Happy to see that you have a good weekend with your family. When Jimmy was going through chemo, I used to make him fruit smoothies with whey protein powder added, this ensured that he was getting plenty of vitamins and are quite filling. I add natural yogurt, not bio, banana, blueberries, strawberries, milk and other times go for more tropical fruit like mango's and pineapple's so that he was not having the same all the time. No grapefruit through...you probably already know that Grapefruit and Tarceva are a no...no! Hope that is of some use Daisey.
Take care Deanne xxx
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Post by wendy on Feb 3, 2008 23:51:04 GMT 1
Hi Daisey This weekend will be better than a tonic for you both so pleased that you had such a good time and could share things with others, as well as having your mind taken off the situation by the grandchildren. How would fresh homemade soups go down? I found them appetising, but not too much on the pepper or spices, infact any would start me coughing. My tastes certainly changed and varied as time passed but generally go with the flow. Wishing you both another good night night night love WendyXX
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Post by dtay on Feb 4, 2008 18:00:50 GMT 1
Hi Daisey - how are you doing ? My Dads tastes have changed too, the same as Wendy's, but he loves homemade soups made with lots of fresh veggies. My sister makes fruit juices for him too - he loves apple juice at the minute. Spicy stuff seems to take his breath away and sweets and choccies make him feel sickly . As Wendy says the tastebuds sem to change from time to time ! Take care Dawn x
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Post by daisey on Feb 4, 2008 19:05:58 GMT 1
Thankyou all for your advice and your caring vibes! Really mean that, since finding this site I feel much less alone and I know that we are far from alone (sadly) in what we're (all) going through. I didn't know about gratefuit and Tarceva Deanne! Thank heavens you told me! I'll buy some whey powder tomorrow too and try some smoothies. Bob is fancying sweet things more than savoury which is very unusual for him. We both slept well last night after everyone had gone. Both tired but nicely tired for a change. Love to you all. Daisey xx
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Post by wendy on Feb 4, 2008 21:41:49 GMT 1
Hi there Daisey wouldn't you think the dr. or pharmacist would have mentioned the grapefruit. My Dr. spelt everything out, before chemo, during chemo, before Tarceva and during it. once again this wonderful site did its bit. I also went off tea and started drinking weak coffee (that's water with maybe a grain of coffee). Now I'm back on tea but with a sprinkling of sugar (disgusting) and off coffee. Think my tastes must change with the wind! Had a wonderful fruit jelly with raspberries and strawberries in, something I haven't fancied for the last 100 years! Doesn't knowing that there are others out there in similar positions to yourself help? Wishing you both another really good nights sleep with love Wendyxx
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Post by Deanne Jenkyns on Feb 8, 2008 18:58:09 GMT 1
Hi Daisey, Been wondering how things are going? Good I hope.
Deanne xxx
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Post by daisey on Feb 9, 2008 14:43:53 GMT 1
Hi everyone, been off line for a few days but all ok now. 1 month on Tarceva now. Still the 150 mg dose. Bobs pain has nearly gone. He needs PKs at night still but is now on half the dose. Daytime is much better apart from now and again. The rash almost went away completely, which worried me a lot, but its back now. I didn't realise it would wax and wane like this. Our GP knew absolutely nothing about the drug Wendy and didn't even pick up his journal to look it up when we saw him a few weeks ago! Love Daisey xx
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Post by Deanne Jenkyns on Feb 9, 2008 17:31:55 GMT 1
Hi Daisy, Fab that Bob is doing so well!
Deanne xxx
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Post by dtay on Feb 9, 2008 19:22:39 GMT 1
So pleased to hear of Bob's improvement Daisey - my Dad's rash used to come and go like Bob's does (and also Dad's GP had no knowledge of Tarceva either !!!) Thinking of you Dawn x
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Post by wendy on Feb 9, 2008 20:39:00 GMT 1
Hi Daisey So pleased your news is good, just think where you both were a month ago and how far you've come in that time. Hope things continue to improve as much. hugs and love to you both Wendyxx
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Post by daisey on Feb 14, 2008 23:03:12 GMT 1
Hi all! Update. Bob still taking 150mg. Rash waxes and wanes. Tolerable though. Some eye irritation for the last few days also skin on hands has become terribly dry and around the nails has started to bleed a little. Hands/Fingers are sore and sensitive. Using a good hand cream and strictly no soap just an emolient to wash/shave with. Bobs ok though and coping with things. Says its all worth it and its not to difficult to handle just a bit tiresome! Yes we are loads better than a few short weeks ago Wendy, we had little hope then and now we have a lot! We are so lucky to have that. Each day being able to get out and about and doing normal things is just so good! Just to have time. Quality time. Thank you all for your good wishes, thinking of you too Dtay and your Dad. Hugs! Love Daisey xx
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Post by wendy on Feb 15, 2008 9:35:05 GMT 1
Morning Daisey and Bob I was wondering how you were getting along, your news is fantastic. I'm so pleased for you both, doesn't it make such a difference when you can get out and start to feel 'normal'? Keep up the good work both of you. Big hugs and good wishes WendyXX
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Post by Deanne Jenkyns on Feb 16, 2008 11:47:25 GMT 1
Hi Daisey, Fantasic that things are going so well. I know what you mean about being out and doing normal things! It feels great! I said to Jimmy it's great to have my husband back. It infuriates me that patients are not been given this chance. NICE have a lot to answer for! Thanks for updating I love reading posts like this they make me beam!
Deanne xxx
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Post by daisey on Feb 18, 2008 18:39:05 GMT 1
Back again! Bobs still on his 150mg dose but we had to see the GP today as his hands became quite bad. After doing some research via. Ontalk it seems these skin tears around fingers and toes are common sideaffects from the Tarceva. We have been given a steroid impregnanted plaster sheet called Haelan tape which is a clear plastic which you cut off and apply to the affected area. Also, following in Jimmys steps, Bobs on a 5mg dose of steroid daily for one week then alternate days. On the plus side we had a long walk on the coast at the weekend and I had a helper with the bedmaking for a change! Very nice too, those duvets have a mind of their own! Daisey x.
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Post by wendy on Feb 19, 2008 9:58:19 GMT 1
Hi Daisey Your walk sounds a tonic I'm envious! Hope Bob's toes improve, good that you have a GP who cares and does something. Duvets do have minds of their own don't they must have been nice to have your helper, long may it continue. Take care and keep up the good work Love and hugs WendyXX
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Post by Deanne Jenkyns on Feb 19, 2008 13:53:28 GMT 1
Hi Daisey, Jimmy has had some slight problems with his skin spitting on the end of his fingers but not too bad, the rash caused more problems which is very much under control now, very slight, he still gets the odd breakout and is having one now, but no where near as bad as when he 1st started Tarceva, most people I speak to who have been on it for some time say the the same the side affects tend to settle. Great that you are getting out and about and back to some normality! Great to be normal isn't it!
Deanne xxx
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Post by daisey on Feb 23, 2008 0:10:58 GMT 1
Bob still on 150 dosage. The tape and steroid tablets have made a definite improvement all round. One needs to find a means of managing the whole setup as an individual. We seem to be getting there! The internet has been invaluable in providing info. about new treatments such as Tarceva but smaller web sites such as this one have been equally valuable. The emotional support and practical advice from this site over the last few weeks. have been .......well brill. Thank you all and thanks to Deanne and Jimmy too for sharing all their experiences and providing this "meeting point" while we walk the same road. Daisey xx.
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Post by Deanne Jenkyns on Feb 23, 2008 0:13:56 GMT 1
Hi Daisey, so pleased that you have things under control. Where would we be without the NET...well I dread to think! Thanks for updating (((((hugs))))) Deanne xxx
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Post by wendy on Feb 23, 2008 12:41:17 GMT 1
morning Daisey Pleased that everything is going well and that the treatment is working Love Wendyxx
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Post by daisey on Feb 26, 2008 19:32:59 GMT 1
26th. Feb. Well Bobs still on the 150 Tarceva but today the rash has been the worst ever. Also his thumbs are in a bad state. Very sore, swollen and the skin has just split off despite the tape and protectors. Any advice would be welcome. Going to see the GP tomorrow if no improvement by then. Trying a strong steroid cream for tonight. On the plus side, lots of energy and feeling pretty d**n good (apart from the above!). love Daisey xx
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Post by Deanne Jenkyns on Feb 26, 2008 23:34:58 GMT 1
Hi Daisey, Sorry that bob is suffering with the rash and the fingers, I hope this settles down soon, must be very painful. Have you tried asking on onctalk.com. Hope you get some answers soon.
Deanne x
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Post by daisey on Mar 3, 2008 12:14:26 GMT 1
3rd March. 150mg Tarceva. Rash back to "tolerable" level and fingers under control thankfully. Went on Onctalk Deanne and got some useful info on a product called gloves in a bottle. On order so will let you know if its effective. We are "escaping" for 2-3 weeks now and then back for a scan in early April (I think). My best wishes to you all, keep well! Love Daisey xxx
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Post by Deanne Jenkyns on Mar 3, 2008 12:31:49 GMT 1
Daisey, pleased that things are more settled and that you found some useful info on onc.talk. Have a wonderful time away it will do you both a world of good! Catch up with you when you return Gurusuruz! iyi sanslar! Take care Deanne x
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