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  • wildplaces
    wildplaces Member Posts: 544
    edited May 2018

    delvzy,

    Would you consider getting a second opinion?

  • aussie12
    aussie12 Member Posts: 421
    edited May 2018

    Hi all

    I had a bad reaction to the chemo yesterday and they had to stop it. I felt like I couldn't breathe also felt sick and went all red. I nearly ended up in ED. It never happened before when I had chemo. Luckily I started to feel better after a while, I still have my chemo pump on until tomorrow so when I go to the hospital tomorrow I will see what they say.

    Delvzy glad your transfusion went well.

    Carol

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2018

    Oh Carol, that's awful, hopefully all will go well today.

    Delvzy - I second Wildplaces - see if you can get a second opinion - it can't hurt.

    Lucy, hubby is going so well, I have had to take the car keys off him so he won't drive! He's not allowed to drive for six weeks, and insurance won't cover the car. We can't afford to lose the house, but he's a "boy" grrr ... he's indestructible apparently. Seriously, he is going really well. No limp, no pain meds (thankfully) and getting more and more frustrated at what he's not allowed to do each day lol.
    Trish

    xoxo

  • aussie12
    aussie12 Member Posts: 421
    edited May 2018

    They said that next time I have the chemo that instead of 2 hours they will slow it down and it will be 4 hours. Also I have to take steroids 2 days before. I also saw the dietetion today and I'm all ready eating lots of the food that they recommend which is good.

    Trish it's great to here that hubby is doing well.

    Heaps of rain and storms here this weekend.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2018

    Hi girls, sorry for disappearing for so long.

    Loads going on in life in general and then a couple of weeks ago I got terrible pain in my lower ribs on the left, so much so that I could barely breathe. It's taken two trips to Adelaie and one to Gawler for CT to make sure I hadn't thrown a clot and to find out that it's all because of previous crush fracture at T7,8,10&11 and I picked up an arm full of wood for the fire and strained all the muscles.....ugh! Haven't been able to do my duty days at the station as I can't move that quick yet but I'm getting there. Pain is finally easing so long as I take it easy.

    Oh Judy, so sorry to hear of your latest bump with this ride. I have been doing a little more reading and research and have found a lot of information on how this occurs.

    Firstly, in order to develope bone metastases the cancer cells must colonise the bone marrow......the bottom line on that one is that it only takes over one section of the marrow and is quite common. What isn't common is that cancer takes over more if not all of the marrow structure which causes a whole lot more problems. The biggest problem is that your red and white blood cells as well as platelets have difficulty regenerating which means you need whole blood transfusion to combat the side effects of that. As for other treatments, initially, I've read that doxirubicin and chemo are used followed by an AI but each oncologist will have their own idea as well as what is now the recommended treatment. The above treatment is for when the cancer has totally taken over the marrow and is is possible that yours is not to that stage and so your onc is still hoping that you don't need to go down the road of heavy chemo just yet.

    I read that you have had a transfusion which hopefully is making you feel a whole lot better. As always, there is no law that states you cannot get a second opinion if you are not comfortable with the treatment that has been offered you......even if it's just to put your mind at ease it might be a good thing to do. Alternatively you might just make an appointment with your onc and ask a few pointed questions.

    Hang in there lovely, you got this.

    Carol, not good that you had such a reaction to your chemo......I sure hope you a feeling a whole lot better now so you could finish your treatment.

    Trish, so glad to hear that Bob has and is recovering well from his hip replacement.........I have heard that's it's hard to keep a good man down so yours must be the very best.

    Hi to everyone else, it's taken me quite a few hours to get this written as I've had quite a few interruptions and as per usual I've almost written a book......lol.

    Love n hugs to all. Chrissy


  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    Chrissy it is so good to hear from you I have been wondering where u were and how u were going You are a valuable and very kind knowledgeable friend and I do value your opinion. You are correct he doesnt believe it has taken over my bone marrow which is why he wants to try the meds first but I could have taken chemo tablets but I chose to try the meds first before applying the bigger guns. In Bendigo we have a specialist team of oncs so he doesn't operate on his own but runs it past 5 others 2 of whom are very experienced with stage 4 breast cancer. I feel so amazing a few days after my blood transfusion and am back running and not needing a sleep in the middle of the day. Thanks so much for researching it fits in with what my dr said that he has had many patients with it in bone marrow and I couldn't understand why it seemed to be so rare in the boards but it hasn't taken over my bone marrow which is a different scenario to just starting there.My hemoglobin has only dropped in the last month though the tiredness had been around and getting worse the last few months,

    So glad u are recovering and it must have been quite worrying for u. Xx

    Hope everyone else is going well and I am so grateful for everyone's care and opinion




  • Lucy55
    Lucy55 Member Posts: 2,703
    edited May 2018

    Chrissy ...sorry you've had so much going on ...it must of been extremely worrying , as well as coping with the pain ..Thank goodness it ended up being pulled muscle ..We'll have to blame winter for it !!! It even felt chilly here in Brisbane yesterday , and I'm hiding under my blankets at the moment !

    Trish...great news about Hubby !!!!

    Delvzy..glad the transfusion has helped so much !

    Hugs to all

  • wildplaces
    wildplaces Member Posts: 544
    edited May 2018

    Delvzy,

    Sounds like you've got this under control - sorry if I sounded like a worry wart.

    Hugs to all dealing with treatments or treatments side effects.

    😊🌷

  • Delvzy
    Delvzy Member Posts: 454
    edited June 2018

    wildplaces I am the biggest worry wart of all!! Thanks for caring. I seem to really connect with the ladies on the Aussie site u are a lovely caring bunch❤️

    I had my blood tests yesterday before my bone injection and 2 weeks after my transfusion my hemoglobin has come back up to 97 from 70 so I have enjoyed the extra energy and not having to sleep all afternoon in bed. I only need an hour and 1 half sleep now . Onc appt next Wednesday so see how the tumour markers are going .

    Hope everyone has a great weekend 💋 Judy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2018

    Good news on your blood, Judy and hopefully it keeps improving. Wow! Short naps indeed!...😁 Hope your markers are heading down, good luck!

    Hope you have a lovely weekend as well. ❤

    Usual busy Friday with a cardiology visit thrown in for good measure. Nothing new to report but he wants me to up my use of nitrolingual as an experiment to see if it helps my breathlessness and if it does, he will schedule me for an angiogram to make sure there are no blockages. Ho humm.......and so the dance continues.

    Love n hugs all. Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited June 2018

    Hi all

    I had another bad reaction to the chemo yesterday and ended up in the Emergency dept. I had an anaphylactic shock like before but this was worse. They had to call a Code Blue which has about 10 staff come to help. It was terrible as I couldn't breathe . I had to stay in the short stay unit in ED while they monitored me and had blood tests, They gave me a dose of adrenaline with the Epipen yesterday and the Doctor gave me a script for one but there is a big shortage of them. They cost about $100 each but luckily I have just got a health care card so should be cheaper.

    The chemo unit will contact me soon for a review and I'll have to change the chemo that I'm having.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2018

    Oh Carol, that must have been so terribly frightening for you. Going into anaphylaxis means your body has become allergic to the chemo. Here's hoping that the new regime will treat you a whole lot better.

    It's good that you were given a script for an epipen as a precaution even though they a not cheap. Take care lovely.

    Love n hugs. Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited June 2018

    Thanks Chrissy.

    Carol

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited June 2018

    (( Carol )) So sorry you are going through this ...

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2018

    Carol, that must have been a horrible experience for you. Hopefully they'll find a new regime that doesn't have that frightening impact.

    Sending you lots of hugs and wishes.
    Trish

    xoxoxo

  • Delvzy
    Delvzy Member Posts: 454
    edited June 2018

    Carol very frightening for you. We went with some friends to Hobart Tas on the weekend unfortunately I picked up a dreadful cold from either the plane or airport . Here is a pic from Port Arthur

    image


  • Delvzy
    Delvzy Member Posts: 454
    edited June 2018

    I was at Port Arthur 22 years ago but didn't go in because it was too late in the day. Martin Bryant passed us as we were driving out. It was good to see the memorial garden and the colours are just beautiful



  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2018

    Wow, Judy! What a lucky escape! You were obviously meant to be here much longer. What a memory to have.

    Hubby and I are going over to Hobart (and other places) for a week in October. I have never been to Tassy so I'm really looking forward to it.

    We are off to Cairns next week, Wednesday, for hubby's nieces wedding and a catch up with all his family. I'm particularly excited about the wedding and also finally meeting five new additions in person. Can I say, there will be lots of baby cuddles coming my way.😁

    Love n hugs to all.. Chrissy

  • Delvzy
    Delvzy Member Posts: 454
    edited June 2018

    Chrissy sounds wonderful. Cairns for some warm weather and Tassy for beautiful scenery. I particularly love Hobart I could go again and again. We are hoping to head back in Feb for another few days to go to wineglass bay as well as Bruney Island

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited June 2018

    Delvzy ...lovely photos of you , and hubby 🌞

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2018

    Chrissy enjoy Cairns, it's a lovely place - just too hot and humid for me.

    Tassie is one of my favourite places. I'm lucky to have been almost all over, and there are so many beautiful places.

    Judy you are indeed fortunate to have missed that horrible man.

    Trish

    xoxox

  • mandymoo
    mandymoo Member Posts: 632
    edited June 2018

    Carol, I am so sorry to hear of your alergic reaction to the chemo, fingers crossed they find another chemo that will kick butt. My thoughts are with you.

    Delvzy, I hope that you can shake that cold soon, not nice. We have been to Tassie a few times and love it. Funnily enough we went to Port Arthur exactly 1 year after the incident and we didn't realise that it was the first anniversary. We had only been there a couple of years earlier and then to see it afterwards.....it was awful and very eerie. I couldn't imagine how terrible it must have been for everyone there.

    Chrissie enjoy Cairns at least it will be nice and warm haha.

    We have had a bad couple of weeks with our dog, Ricky. It turned out he had a twisted spleen and he had to get it removed. We thought we were going to lose him, but he is such a strong dog. The first visit to the vet thought it was because he had a change in diet, he improved a couple of days later and then he went downhill pretty quick after that. The vet kept him in and put him on a drip and antibiotics as the had a temperature and was very dehydrated and they still kept treating him for pancreatitis. I insisted on an ultrasound the next day as he did not improve even though it was afterhours, and that was when they said he had a twisted spleen and had to be operated on immediately. Ricky got his stitches out last Friday and he is back to his normal self. Yay.

    All is well with me except grand daughter number 2 has been quite ill for the past couple of months with whooping cough and as she had only just been diagnosed with Coeliac disease, she has missed quite a lot of school this term, so, I Have been putting up my hand for extra baby sitting shifts as Mum was not coping for a while. She is slowly getting her strength back and is able to do a 4 day school week now.

    My daughter is off to Canberra this week due to work, so I am off to Adelaide for school pickup of grand daughter number 1 and I will be sleeping over for a few days so that I can do school drop off and school pickup while Mum is away. Its a good excuse to have lunch with my bestie tomorrow as she lives close by.

    Hugz to everyone and try to keep warm

    Mandy xxxxx

  • Delvzy
    Delvzy Member Posts: 454
    edited June 2018

    Mandy coming up to 6 years with mets. Anaxing

  • wildplaces
    wildplaces Member Posts: 544
    edited June 2018

    Delvzy,

    You look great - I love Tassie. Thank you for posting.

    Wishing everyone great and safe travels.

    😊🌷

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2018

    Hello everyone

    Mandy I'm sorry to hear about Ricky - but Yay! that he's back to normal :-)

    Well I had to call an ambulance for hubby on Monday morning. He's been steadily declining over the past four weeks or so. He had a chest x-ray that showed fluid on the lung and a partially collapsed lung, and was being treated with antibiotics. But he just wasn't improving. He would let me call an ambulance, but Monday morning he finally gave in and said yes. He was in ED for 26 hours before a bed was available.

    He's in a ward now - and he has several blood clots in his lung and one is quite large. I'm so mad - he saw the specialist for the sign off on his hip last week, and that part is all fine, no problems at all. The specialist asked how long he'd had the cough and the shortness of breath, and hubby said ever since the op. The specialist pulled up his x-ray done in hospital, and there was evidence of it then. No-one at any time told us about it or did anything about it. 

    Hubby is a fairly lean muscly man - just on 6 foot tall and was 82kg going in to the op. He's now 65kg. I keep thinking that I could have come home from work, or woken up in the morning and found him dead.

    I called the specialist yesterday and gave them a piece of my mind. The girl I spoke to said he would review the x-rays and also the anaesthetist's notes and get back to me. 

    Hubby is comfortable at the moment, but still on oxygen and lots of blood thinners.
    Trish

    xoxo


  • wildplaces
    wildplaces Member Posts: 544
    edited June 2018

    Trish - I am so sorry to read this - well done for trusting your instinct and getting that ambulance.

    My thoughts are with you both.

  • kanga_roo
    kanga_roo Member Posts: 302
    edited June 2018

    Trish, hope hubby is on the mend... it is so frustrating when you do everything you can to look after each other and something beyond your control stuffs things up.

    Sending big hugs and a rose from my garden image

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2018

    Oh no Trish!! That's not good at all!! Thank goodness you rang that ambulance. I can't believe how much weight he has lost......not good! At least now he is in the right place for treatment and under supervision so you can at least not worry about what you might find.

    Take care lovely and say hi to Bob for me when you think he is up to it.

    Sitting in my DD2's lounge, we have just finished dinner and are now relaxing in front of the fire discussing her trip trekking a mountain in Nepal next year......wow! DD1 is also here with her partner.....it's so nice to have both my girls in the same place.

    Tomorrow morning 6am is our leaving time.....so I'm guessing there will not be too much sleep for me.....lol. I finished the waist coat for hubby twenty minutes before we left home ........can I say, he is a very happy camper.

    Take care all.

    Love n hugs. Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited June 2018

    Hi all

    Trish sorry to hear about your hubby but glad that he is now in hospital being looked after.

    I had my chemo today with no problems, I didn't have the oxyplatin but I have the pump on until Friday.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2018

    Carol, was it the same chemo that you had the bad reaction to? So glad all went well for you this time.

    Love n hugs. Chrissy

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