User Profile
Fiona2
Member
Joined 10 years ago
User Widgets
Contributions
Re: Perjeta for early stage HER2+
Hi GalMcB. My story is very similar to that of Sydneygal ie Her2pos, grade3, stage 3 and having the works thrown at me, including the perjeta and after 6 months there was no sign of tumour. Had minimal surgery but still followed up with radiation and the full year of herceptin. My oncologist seemed to think that pejeta was an important part of the mix but can you ever possibly tell? Can say though that it felt amazing and astounding to get such a great result following such a bleak and scary time. Would be tempted to say I felt 'blessed' except I'm not keen on that concept. Just very, very lucky to have a great medical team, great available treatments and, oh yes, I beautiful and generous sister who footed the $8,000 bill. We seem to have the good fortune to have the best treatment options for the Her2 pathology and I wish you the best for your treatment and its outcome.7Views0likes0CommentsRe: Mepitel Film for Radiotherapy
Hi Mags. It was recommended to me by a work colleague who had mentioned that in her cancer support group, the mepitel user was the only one to not suffer radiation burns. With this recommendation, I was also pretty keen to give it a go. It delayed my treatment by a week as the hospital had to order it in. There also needed to be a slight adjustment of my radiation settings to accommodate it. However, the nurses were very supportive and keen to see the results as they had had little experience of it. It was applied and left on over a large region of my left chest, breast and lower neck region. It stayed pretty well in place, though did get regular checking by the nurses and a bit of patching here and there over the six week period. I wasn't sure what to expect or what might be considered 'normal' but into about the fourth week, the nurses frequently commented how well my skin was 'holding up' as it continued to do to the end of the treatment. By the end of six weeks, I certainly had some swelling and tenderness of the breast (almost reassuring as it let me know that something had happened) but my skin was absolutely fine, perhaps just the faintest bit pink. It certainly gets a big tick from me.30Views1like0CommentsRe: Wishing @Cate64 a very happy Birthday for today 12th May ;o)
Hey Cate- I hope you have a great birthday and that you are still running. We didn't get to do the Mothers' Day Classic this year but planning next year we will be out there, even if we're walking (!) with love and best wishes, your sometimes running buddy Fiona17Views0likes0CommentsRe: Getting ready for Chemo, any advice?
Wishing you all the best Sabina and sending you loving vibes for a great outcome. I remember that feeling of just wanting to get it started so as to be able to focus forward. Your little girl looks beautiful and I hope it will not be too scary for her. Don't forget to soak up all of the love and support offered to you as it will help you through the tough moments. xx33Views1like0CommentsRe: Getting ready for Chemo, any advice?
Hi Sabina, I finished chemo about 2 and a half years ago. I had a course of 4 FEC treatments over twelve weeks then followed by 12 taxol treatments, along with herceptin and perjeta. It was long and gruelling but eventually, almost unbelievably, you finally get there. I had a port in and would definitely recommend this as the endless jabs for blood and lines does not get easier over time. I did the head freezing initially during the FEC but then stopped because my hair all fell out anyway. However, it started to come back during the weekly taxol, so the nurses urged me to give it another go. Gotta say I hated it, particularly as my hospital also gave me frozen mittens and my well meaning sister brought in frozen eye pads to help preserve my eyebrows. I landed on the idea of taking along some of the sedatives that my oncologist had given me early in my treatment and found having taken them, that I could doze off for a couple of hours which was brilliant. My main recommendation would be to try to keep exercising during the chemo. Initially, I felt I could hardly get off the couch but once I got going, it really helped me to feel better and like i was human again. Walking in the parks was beautiful but I particularly came to love my bicycle. I'd read that it was good to exercise on the day of chemo to get your circulation and metabolism all activated and ready to maximally soak up the chemo so I'd try to fit in a 30-45 minute ride before going to the hospital. As my chemo was neoadjuvant (before surgery), I was able to monitor its effects upon my tumour and at the end of the first three months, the tumour was no longer palpable which was amazing and by the end of the six months the MRI was normal. My treatment was fantastic but I definitely think that the exercise played a big part. It will feel like a very long haul at the time but hang in there and hopefully before long it will all be in your rear vision mirror. Fiona x23Views1like0CommentsRe: Tamoxifen, is there anyone out there who HAS NOT been suffering awful side-effects?
Hi! I've been on.. and off..tamoxifen these past two years. Like you, I really didn't want to take it and as I'd had very good results on Herceptin, I was not really convinced that I had much to gain from it. I didn't notice any huge difference on it though I did complain of being tired, fatigued at work and struggling to get back my exercise fitness. So I had a bit of a holiday from the tamoxifen and guess what? I got incredibly sore and achey in the wrists down at the base of my thumbs. This had been niggling for a while and is aggravated by my bike riding and yoga but it really became agony. Had I been taking the tamoxifen at the time I would have cursed it bitterly and sworn off it but it wasn't to blame! Wrists eventually settled down, now back on the tamoxifen and other than a few cramps, I have few complaints. I now try to manage the fatigue with early nights and taking it a bit easier. Best of luck with your treatment. Fiona10Views1like0CommentsRe: Exercise and Eating
Hi! Just wondering if you have any bike paths near by. I find being out on the bike is my happy space, particularly on a beautiful day and you can always find a cafe. It was even more valuable to me when I was going through treatment (actually used to ride to radiotherapy and to herceptin treatments which definitely suprised the staff though they came round to giving me a lot of encouragement).Re: ......And, we're back
Hi Again! Don't forget to eat up all that soul food.. like music, nature walks, time with close friends and whatever else helps you feel good. I'm sure these things have been a big part of helping me get this far. Your post doesn't leave me feeling anxious so much as serves as a reminder to get back to doing these things. Too easy to return to the bad old habits of stress and bad head space. I'll keep thinking of you as you face that wall of treatment and hope that the support around you makes it just that little bit less difficult to get over. Fiona xx8Views5likes0CommentsRe: ......And, we're back
Hey Eight Days, you have my love and sympathy. I really feel for you as it is the sort of scenario that I try to not think about as I step along through remission (3 years now), trying to get on with living my life and daring to hope that all this stuff is behind me... yet knowing, that like you, this set back could happen and ambush at any time. You got through it before. The treatments have maybe even advanced a bit since you were last in this space so there is always hope, for you and your beautiful boys and daughter. But what shitty news. It must be very tough! Loving thoughts and vibes, Fiona xx10Views1like0Comments
Groups
No places to display