Australian Sisters
Comments
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Hi Her2husband
I haven't had any experience with chemo-induced peripheral neuropathy, but there may be someone who comes along that does. I would talk to your wife's onc though, he/she may be able to help her with meds.
Good luck!
Trish
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Hi Her2husband
I had quite severe neuropathy, Just add pain killers to the blend and unfortunately I still have it in my feet and toes but have got to a stage where I cope with it. It can get very painful when it is cold so a wheatbag is wonderful but you do have to be careful not to burn yourself. Some people suggest Vit b1 and B12 but my oncs prefered that you didn't take supplements during chemo. Talk to your wife's doctors and let them know this is happening. Sending her big hugs.0 -
Thanks Trysha and Alyson,
my wife has just finished 12 weeks of Taxol and is really feeling pain and numbness in her feet. I know CIPN can last a little while to perminent so hoping it will get better. Thankfully we live in a warm part of WA and she wont be affected by the cold. she will be seeing her onc in a couple of weeks so hopefully he has some suggestions.
Wow isn't this journey crap. lots of new conditions/complications you just don't know about until they are upon you.
It is good to have found this forum.
Thinking of you Karen, hope the scan goes well.
J
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http://www.riversideonline.com/health_reference/Nervous-Swillystem/BN00046.cfm
Her2husband, the above link will take you to a pamphlet from the Mayo Clinic that talks about neuropathy and it's treatment and control and what can to be done.
Hope this is helpful.
Trish how are you? Any news on the cause of your pain yet? and has your cutting gluten helped? Yes, I know, it's twenty quetion time again........lol......you should know by now I'm like a dog with a bone, I just keep gnawing away.......hahahahaha!
Karen hope you are feeling better and get that new treatment underway soon.
Got to go bake a birthday cake for GS #4. BBL
Love n hugs. Chrissy0 -
yea, vet costs. we just had ours in the vet last week for heamatoma, the ear fills up with blood and if not seen to , burst and cause what they call a cauliflour ear. so she as to wear a big plastic hat that she hated, we took it off lol, she kept trying to shake it off and hurting her ear. wait for it, $1000.00 later and we also had our little foxy in to be fixed, so altogether 1200. big moneys.
i sure somebody can help you with your question, Her2rhusband. sorry i am not up to that knowledge of things. warm hugs to you both..
Karen hope scan went ok.let us know later when you ready.
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Her2husband - yes it's a pretty crappy journey alright! I kept threatening to contact the travel agent and demand a refund for the journey lol - just take one day at a time, that's all you can do. Sending your wife ((((hugs)))
Chrissy - I'm ok. I'm still having good days and bad days. Cutting gluten seemed to help a bit last week, but yesterday and today, the pain's been more intense than for a while, and the digestive problems are still there.
I have referrals to get a colonscopy and endoscopy done, but can't get them done until the new year, so won't find anything out anytime soon. One good thing with the gluten (almost) free is that my joints don't ache quite so much lol.
I know you are like a dog with a bone (so's my new doc) and that's ok with me. But - nothing will be done till next year. I finish work on Friday and have a whole 16 days off!!! I haven't had that much time off in one hit without being sick for years
Looking forward to some "me" time during that.
Trish
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Hi her2husband. I iced hands and feet during chemo to avoid neuropathy,but still got some. Often onc will prescribe neurontin or similar for neuropathy. Hopefully it will only be short term for your wife. I find putting my feet up helps and no tight socks etc.
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Sorry, no help with neuropathy......I just shake & wiggle my hands & feet....lol
Trish....your issues are certainly dragging out but I guess all you can do Is be patient. Have a wonderful time chilling & having you time for 16 days.
Chrissy....I'm sure your GS's cake will be beautiful coz it's made with much love....your family is very lucky to have you.
Scan went well, my heart is good & strong so I'm good to go with the chemo on Thursday....yay!! Not looking forward to finding out the side effects but not much I can do about that.....
Take care all.
(((Hugs)))
Karen xx0 -
hi girls, hope everyone ok. Karen, how are you? warm hugs
Kate. how are you doing? think of you often. lots of warm hugs to you.
Trish. hope they get you sorted. i have been having this coconut oil, i have it my toast with marmite on , and it is gluten free, sugar free and apparently good for diabetes. hubby brought me some vogle bread and got me gluten free by mistake and its quite nice. i am not as windy and no reflux, like i get with normal bread, i get a sour tummy from bread at times, but this is not doing that. so i have that and coconut oil, spreads like butter and marmite and keeps the bowels good with the coconut oil.
But chrissy, did your brother or mum ever talk about DRY MOUTH with their diabetes, i have that and i drink and then have to wee often. just wondering if it is a symptom of the diabetes.
Hope everybody is ok and having a good day.
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Hi Annette, yes they both complained about dry mouth and drinking heaps........it is a symptom of diabetes unfortunately but according to what my mum used to say getting your sugars under control does improve it. In the meantime get yourself some Biotene mouth wash (available from any Pharmacy) and use that to help with the dry mouth. I have dry mouth from the Femara that come and goes and I use that product........it contains a lot of the enzymes that are found naturally in your mouth so is way better than any other mouth wash.
Just finishing off grandsons birthday cake before I head for the city and his birthday tea........he is fifteen today and has insisted that I make his birthday cake every year even forgoing an ice cream cake that was offered by his mum on year.......lol.......I still remember the look of horror on his face to think that she would even think that it would be acceptable! I did miss one year, but he forgave me for that as I was in hospital recovering from the mastectomy.
Karen good luck with your first infusion with the new chemo......hopefully the SE's won't be too bad and easy to manage. ((((((hugs)))))
Kate, hope you are doing okay and getting through all the headaches that being stage IV can bring with it. (((((hugs))))
Have a good day all!
Love n hugs. Chrissy0 -
Chrissy, I am sure yr granson will love his birthday cake, nothing will match up to grans cake. lol hope you have a lovely time. thanks for that info about dry mouth, i will call in and get that. mouth wash.
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Karen hugs for your infusion this week.
Trish, it's a bummer about your pain. Hopefully some answers soon. Have a great break and enjoy some down time in your new home. My mouth is watering thinking of your new kitchen and Chrissy's cake, mmmmmm.
Feel like an idiot. The pain in my arm, I asked a friend to put some sunscreen on and she said I had a dark bruise (I had asked dh and ds if anything was there lol). It ran from my shoulder to elbow and was narrow, I must have bumped it but I really don't remember. I still have a sore vein in bottom half of arm but glad to know it was simple.
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Well girls I have just arrived home and it is 1.30am.........I'm bushed but need a little quiet time before heading for my bed.
Birthday cake was a hit, not just with GS but with everyone! It was a double chocolate cake with chocolate ganash and whipped cream in the centre, repeated on the top with homemade toffee confetti and toffee slices to finish off. It looked pretty impressive and tasted just as good as it looked......lol.
I would have been home two hours ago if it weren't for the mess I found at DD's house when I called in to do the whipped cream on the cake and pick up other grands......way too hot to do it at home and then try to transport. DD was at work and I know how stressed she has been over the fact that she has been so exhausted when she gets home to do any cleaning so I decided that after dinner when I took the boys home I would get them into gear and supervise while they cleaned the house for her.........then they got a good talking to from me about doing their bit in the house all the time not just when asked. Hopefully I made a bit of difference and if not?.......well I can always go back and repeat the exercise...lol......not sure if the grands would welcome it though.
Kylie it's good to know that the pain is something simple but dang girl! that must have been some bump to have one that big and that sore. Hope it settles quickly for you.
Love n hugs all! Chrissy0 -
lol chrissy, Gran, is on the war path, but they do need to help their mum, she is at work trying to do her bit and put food on the table for them, they need to do their part as well. its only fair. They may snub you next time, its funny though, mum has told many of her grand kids off for something and she thinks. gosh they wont want to see grandma again for a long time and then to her surprise, they call in, hello Grandma, bug hug, love you. it does them good from another member of the family, other than their parents.to correct them, you may have started a new trend for your daughter in them doing their bit for their mummy. xx
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Good on you Gran.....let's hope they all listened!! The cake sounds fabulous.....yummo! No wonder he insists that gran make his cake every year.....glad you had a nice day, except for bossing the grandies around..,, lol
Well first Epirubicin tomorrow & I have to admit after all this time with chemos I'm still feeling a bit nervous! I had a few tears yesterday morning when I was blow drying my hair knowing it will be gone in the next 2 weeks....I'll get over it though & keep on fighting! Got too much to live for.
I think my little grandson thinks he's in a bouncy castle.......he's jumping around like a 2 year old at a birthday party......lol.
Anyway, will keep you all posted re side effects.
(((Hugs)))
Karen xxx
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Annette they must still love me as they both gave me big hugs and kisses as I was leaving........I think I told them a few home truths so hopefully I made a bit of difference and they will continue to keep the house clean. The stuff that was everywhere were mainly belonging to the 16 yr old but they both were guilty of not putting their clothes away after their mother washed and folded them.......all I can say is thank goodness they have a good supply of jocks! Once all that was done and the dishes washed it didn't look too bad but I insisted they vacuum and mop the floors as well as wipe all the benches and cupboards in the kitchen so they sparkled.
Karen, hopefully you won't feel too badly with the chemo.........if my memory serves me well Marybe started a thread called 'between the devil (red devil) and the deep blue sea' when she was on it. Maybe if you do a search and find it and have a read it might help prepare you a bit as I know it had loads of info in it.
Just a rest day for me today so I'm sitting in the lounge with laptop and I have both the ceiling fan and the aircon going so am lovely and cool........I haven't stepped foot outside but I'm going to have to soon as I need to go put a load of washing in........lol.
Stay cool all!
Love n hugs. Chrissy
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I hope tomorrow goes smoothly Karen. Trish told me to use straws to drink which helped. I had four bottles (pop-tops) of different coloured cordial on hand, weird I know but I found it easier to have different tastes available. Took me till last chemo to realise bottled water doesn't taste of chlorine etc so is easier to stomach.
Chrissy could you come and visit, my kids need some cleaning motivation
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Kazzie, thinking if you.Hair loss is the worst experience.
Hi to Chrissy, Trish, Jenn and Kylie.
How is Mandy?
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Hi, Her2Husband, what a lovely man being so involved and caring with your wife's diagnosis. It's so hard with young children, you want them to understand but keep their life as normal as possible, you are obviously doing a great job. Good luck with radio, make sure she monitors her skin for infection.
Hope everyone is doing as well as possible. I've had my first 3 sessions of Abraxane, no major side effects, except my hair is falling out. Emotionally, had my worst day yesterday as my sons left on a cruise with their dad and new step-mum, a woman who was once my friend and was having an affair with my ex, during and obviously after my initial dx! Strange how my recurrence was dx 3 weeks before their nuptials! As strange as me getting really fit and healthy again, as I was @ original dx & again @ recurrence! I even said to my mate, a marathon runner, last year that I had an illogical aversion to getting fit again as I was so fit at first dx! Luckily, I have amazing friends and family who supported me yesterday and last Sunday organised Cath's Big Day Out (CBDO) at Bondi beach. We swam and surfed on mats in the ocean, did laps at the Icebergs pool, lunched at the RSL and finished up with Afternoon Tea @ my sister's apartment. Having great people in your life makes all this crap so much more tolerable, just like all you guys giving online support too.
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Karen good luck today, remember drink lots of water before during and after, but especially during and just after to flush your bladder out xoxo
Kylie - I'd forgotten about drinking through a straw! Yes - it's better because you don't have as much in your mouth to "taste" - for when your taste starts to change.
Chrissy - that cake sounds delish!
Hi Racy
how's your lead up to Christmas coming?We have pretty relaxed Christmases these days, I do most of my Christmas shopping on Boxing day to take advantage of the specials.
Would you believe I have another abscessed tooth grrr.. my three monthly appointment with the dentist is this afternoon for a clean, thank goodness I get gas as part of my mouth is pretty sore.
I'm a bit spaced out at the moment as I'm on Panadeine Forte for the pain lol
Trish
xoxo
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Fitzy - sorry didn't see your post until after I'd done mine. Which one is you?
Can understand yesterday being hard on you - sending you ((((hugs)))
Trish
xoxo
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Karen, all the best for today. big hugs XXOO
Fitzy, yes can feel for you in those situations, you have to enough to put up with and that happens. big hugs, lovely picture. XXOO
hubby is attending the scean of a bad accident , one person is trapped in their vehicle and the other is in very bad shock, two car collision, the highway is completely blocked off. the one in vehicle has sustained some serious injuries. the trouble is hubby calls me to call the emergency sevices and they wnt to know detail and i don't know that area that well, so can only give them brief details. i told them i am not at the scene, hubby rung me and asked me to call the emergency services, but they found them ok. it worries me incase i don;t tell them right place. my knowledge of that area is limited. he said, there were trapped people and that is vital they know everything like that. somebody also had called the emergency, so hopefully could explain more detail than me. hubby has gone now and left the police to handle the rest.
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Thanks everyone for your good wishes
Feeling a bit nervous but know I'll be ok once I'm there & especially once it's over & done with. As you all know, it's not really the infusion that causes fear but the afterwards
Got all my anti nausea meds, sleepers, poo powder, lol & of course all the wigs & scarves from the last 2 times I lost my hair......
Will keep you all posted.
(((Hugs)))
Karen xxx
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The one in blue in the water. Good luck today, Karen.
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Thank you Fitzy,
being invoved kind of just happened...just like the diagnosis...if anyone had of said a week or two before dx that the next six months were going to pan out the way they did I would have said there is no way I would cope but you just do don't you. we went from being very naive about what was infront of us to now being battle weary with still a long journey ahead.
I am sorry things went the way they did for you. From your pic it looks like you have some lovely friends. Have a great xmas.
Kazzie good luck for today...
J
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Hi all. I feel a bit uneasy saying this because so many are having a bad time of it but it might give hope!
It's seven years ago today I was diagnosed.
Not bad considering BS and once didn't think I would make two years. So
here I am and intend being around for a very long time. I made scan
appoint for later in January - my choice.Have baked this afternoon - silly on a hot day but fun, Belgium biscuits, shortbread and mince pies. Very successful afternoon. .
Karen hope all goes well with the chemo, special hugs for you.
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Yay Congrats Aly!!! Every cancerversary should be celebrated no matter what! Those cookies sound delish!
Karen, sure hope all went well today and you don't have too many SE's that are hard to handle.
Wow Fitz, what a journey for you! I sure can understand how you were feeling yesterday. Love your pic, you look great but I know looks can be deceiving.
J, hang in there, it does get better but it seems like it will never end at the moment. Hoping your wife's skin holds up well.......just let her know to make sure she moisturizes constantly.
I have been a couch potatoe today (again....lol) as I have the aircon going and no energy but I will need to find some soon or nobody is gonna get christmas this year! I can't believe it is only days away........OMG!!!!!
Stay cool all!!!
Love n hugs. Chrissy
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congrats Alyson
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Congratulations, Alyson. xxxx. We got diagnosed within a week of each other.... lol. I was diagnosed on December 13, 2006 which was my son's 34th birthday. I am glad that we are both going well and it has certainly been a big learning curve as well. You never know what tomorrow will bring, a few ups and a few downs...
I have been quiet for a while, but reading the threads and trying to keep up. I have not been home for a full day since we came back from Sydney and today is the first day that I stayed home and vegged out. Tomorrow I will be doing my volunteer work and then nothing for a couple of weeks ... wahoo
Karen, my thoughts are with you and I hope you keep up your inner strength and focus on your grandchild.
Cheers
Mandy xxx
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thank you for all your kind wishes girls, I so appreciate it. Karen, I am so sorry to hear of your progression and having some serious chemo again. I. So hope it destroys those tumors and you get a break, it just gets so hard sometimes. Fitzy, that would have to be one of the most painful situations to be ever be put in. I hope she gets a dose of hurt and your husband can look back and see what memories he has destroyed as well as the hurt your children have been through. What wonderful friends, you will be right with them in your corner. Sorry I can't respond to all posts, am feeling very ordinary, see below.
Well I had appt with lung specialist yesterday and he shocked me by showing me the ct I had and how I had extensive lung damage in just 3 months to both lungs. I don't know why my onc didn't show me how bad it was , perhaps because I had taken my son with me, who knows?
Specialist could not decide without investigation if it was from infinitor or a bug infecting my lungs.so after consultation with another specialist was decided to do a bronchoscopy to take pictures of my lungs.
The anesthetist came to see me last night to say he hated saying it but would be a very unpleasant experience for me as would be limited sedation.
Well when I arrived at theatre the other anesthetist came to see me and told me that they had decided I could have no sedation at all because they had a fine line where I could fall asleep and either stop breathing or have a heart attack!
Sparing you the details, it was the worst experience I could ever have imagined and I will never allow that to be done again.
It looks to be the infinitor, which I had no doubt it was and now I am on steroids for 20 days to try and clear all the scarring of my lungs and the infection.
Home now and very sore and sorry for myself, but was told I should feel better after some of the steroids, I hope so.
I happened to be the one in five that have this reaction I was told, but I suspect it would be higher than this. I feel really cut that I had good lungs 3 months ago and now this. So please be wary if you find yourself becoming increasingly breathless before you reach this stage as mine had doubled in severity in 4 weeks from my previous scan. Love Gail
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