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Thread: My mother has WG

  1. #11
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    Thank you to Twice and Suzie for sharing your experience! Mum is getting better everyday. I had real worries about the IV chemo - cyclo, but she wasn't sick or had any real bad side affects. Her appetite is improving, the steroids make her feel strong and give her loads of energy. She's lost an awful lot of weight, at least 12 kg, so putting some on, won't do her any harm.

    They are giving her the chemo pills on Monday, she'll be having it via IV every three weeks. She still can't breathe without oxygen and still has no voice, but the voice can be looked at later. As soon as she can breathe without the oxygen, the sooner she can go home! She keeps saying that the steroids are marvellous!

    At the moment, no mood swings yet, but I have warned her that it may come along!

    Thank you for all your info. It's so reassuring to hear real people talk about their experiences.

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    Default Trish

    Hi Lucy
    Welcome. Your mum is a really lucky lady to have you at her side as she will need all the support you and family and friends can give her at this time. One piece of advice is for her to listen to her body and not to let things go out of control before she seeks help. Unfortunately I feel I have done this as I was working and trying to solder on right up to going into hospital a few weeks ago and ending up having to have a tracheotomy due to the closing of my trachea. I think if I had of been a little more pushy during my monthly hosptial visits while getting my chemo they may have done something less drastic as I had been having breathing problems for a year but hadnt been refered to my ENT specialist by my Rheumatologist. I dont know if things would have changed but I do blame myself for not being a bit more pushy. When my ENT specialist saw me he said I should have rung him and made an appointment but I left it all in the hands of my rheumatologist. I would go into hospital for my chemo once a month, they would ask questions and I repeatedly told them my breathing was going down hill, but I think they thought if she is still able to work she must be ok!!!! I also find that I would like to find out more information via the internet but am completely washed out after working full time, that the last thing I want to do is check out the intenet. Also I have never been very medically minded so a lot of what Im told is like a foreign language to me. Sore eyes dont help either. This is where you will be able to help her gain a lot more information which will help her in her recovery. Good news thought is that I was told at my last chemo which was last Tuesday that my blood was good and that I am now in remission which is marvelous news, so will be starting on methotrexate to keep me in remission.
    It is really good to hear your mum is improving. Send her my best.

    Kind regards
    Trish

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    Dear Trish,

    Thank you so much for responding. It's great that you are in remission!

    My mum is the type of woman who was always busy working and doing things. She never had time for herself and never wanted to burden anyone, including doctors. When she first got ill, it took her ages to get around to the GP and even then, she wasn't pushy with him and just accepted antibiotics. It was only when someone else went with her and pushed to be referred, did she start getting the appropiate treatment. It will be very hard for mum to have a slower pace in life. But I just hope she learns that her health is more important than anything else.

    I've been telling mum in hospital the different experiences and advice given on here. I have already mentioned to her that if she feels anything, any small symptom, that she must let the docs know and not do anything. I think I will do this again. I'm thinking of printing this off and reading it to her so she can hear for herself what everyone has kindly added. Once again, I would just like to say thank you to you and everyone else who has responded to this thread. The experiences and advice are invaluable.

  4. #14
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    I am glad you have taken an active interest in your mom's care. Hopefully she joins the site herself and sees all the stories of people similar to her with WG.

    I was diagnosed just 7 weeks ago and I can't tell you how much better I feel. I initially did an IV pulse at the hospital the night before I checked out and then two weeks later was put on Cytoxan 50MG 2x daily. After a month the doc jumped me to 50MG 3x daily because of my height and weight. Here in the US I am 6'4 and 255 pounds. You know us gringos...screw the metrics...even though it makes sense!

    Just last week my numbers started to improve..ohh so slightly..but improvement is what we look for. No side effects for me on the Cytoxan.

    Anyway as far as the pred goes...was at 60mg of pred down to 50 and looks like next week will be down to 40. Did the 24 hour urinanlysis, WG did slightly affect my kidneys, but my Rheumy believes my two KIDS will be fine!

    In case your mom experience other side effects like tingling, burning sensation in the feet, Lyrica did wonders and I will be completely off them after 1 month of using them.

    I guess right now I am fortunate as I have not increased my weight any and really don't have any hunger pangs. But when I do I make sure I eat right...and that means RIGHT!

    Oh one side effect I did notice on the pred's is that I started to take a more oval shape to my face...similar to the one I attached to the end of this sentence!

    Well hopefully your "Mum" stay positive...visits the website, interact with others..........................and most importantly "Lives for the NOW!

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    Default cyclo

    Hi Lucy, its so nice that you have taken the time to find out about your mums disease. I am 51 and was diagnosed 2 years ago almost. I have taken cyclophosphamide for 6 months and stopped month ago. I was very fortunate in that I didn't suffer any side effects - only now instead of wavy hair I have curls - no more perms for me lol. I wish your mum all the best and that she also has no side effects.
    Jolanta

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    Thank you everyone for your support. It's been a while since I've been on here. Update on my mother is that she is coping extremely well on chemo. They have planned a slow lowering of steroid dosage. She should finish chemo around october time. Her voice is sort of returning. Very husky, but thats better then nothing at all!
    The last IV chemo was the first time it had an effect on her. She was very weak and stayed indoors. Thankfully it only lasted for a day. I think it was because they are lowering her steroids. Apart from that, she has little or none side affects, which makes her one of the lucky ones.

    Mum is extremely strong and I think without that strength, the disease and the treatment can get on top of you. Sometimes, without mentally feeling like you can heal, then the process I think can take longer.

    I just wanted to say that if anyone out there is a relative or friend to anyone who has WG, then the best you can do is to listen to your loved one, learn from real life patients not medical texts and not let the thoughts of the disease and treatment get on top of you. The broader picture is that the WG patient has been diagnosed. Once doctors know this then the right treatment will be given. I will come back soon to write an update!

  7. #17
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    Great to hear that your Mum is doing well. It's a long road but she's got the right attitude and good people around her

    When I was on IV Chemo I was a bit under the weather for a few days but ok after that. I had it on a Friday and would be back at work on the Monday. The first time I had it, I went to work straight after. Only did that once
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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