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Unicornkisses
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Joined 9 years ago
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Re: @Unicornkisses Happy Birthday - 2 Feb
Thank you wonderful Ladies. I had a wonderful birthday shared with my husband, a fellow survivor and her husband on a cruise boat for 3 nights. nothing says birthday more to me than being fed delicious food and relaxing with friends. thank you @Zoffiel my steed and I are both doing very well, I hope you too have flourished post treatment. I have one last tweeking appointment with the plastic surgeon probably in March and then I am all done. I am a little more active on the Reclaim Your Curves site, and am back at work part time and headfirst back into my life .5Views0likes0CommentsWeeping eyes and Docetaxol
When I was going through chemotherapy, 2 years ago, I suffered with eyes that just ran constantly during the Docetaxol doses and for several months beyond that. I have been on Palbociclib and Letrazole for 15 months now and have suffered similar problems, just not quite as severe thank goodness. While I was going through chemo, many people seemed to have the same problems and eye drops did not help. I have finally found a reasonable solution and have to share it with you in case anyone else is suffering. I have found a really good Optometrist. She says that cancer patients should be monitored at least every 12 months but it should be more regularly in the couple of years following diagnosis. I am currently seeing her for 3 monthly routine visits but have had to go every two weeks for the last couple of months due to issues with my eyes. They are all bulk billed. I do have to pay $50 once a year for the retinal MRI. She has also recommended eye gel and capsules that have really helped. I wish I had known about all this while I was going through chemo, as maybe I would not have suffered the horrid red inflamed eyes that weeped constantly and the resulting impeded vision. The eye gel is Xailin Gel $17 tube. I was told to use it 4 times a day when the problems were bad, I am now using 3 times a day. I think only available from the Optometrist. The capsules are Dry Eye Forte, also I think only available from the Optometrist. They aren't cheap but it is a big packet that lasts a month. You take them morning and night. You have to stop them about 2 weeks prior to surgery and for at least two weeks after, and you will need to check with your Oncologist that you are okay to use them. I was only recommended Hylo-forte drops from my previous chain store Optometrist, and while they were okay, they were not nearly as effective or long lasting as the gel and cost about $33. ( available from Terry White Chemmart and from Optometrists) The eye problem was not on the list of side effects my Oncologist gave me, and his recommendation to use eye drops was not helpful. I struggled to find anyone that could help with my problem, the lack of information was frustrating and added to the struggle of getting through the chemo. I am also recommended to hot compress on my eyes once a day to help clear the tear ducts as shortly after chemo I was found to have blocked tear ducts, probably due to the inflammation. That makes the dry eyes worse and is also a bit painful. Hoping this makes life a little easier for those going through the same problems. Please find a good Optometrist, one who has your eye health as a priority and will monitor you through and after treatment.82Views2likes1CommentRe: 2/2/19 Unicornkisses Birthday today!
Thank you all. Cath, I spent it shopping for a birthday rose plant, we found 2, playing with my horse, and he was on his best behaviour and just home from a Chinese dinner. Just about a perfect day. And it was cool!!!! Thank heaven! Marg, I decided not to get on the pony just yet. So definitely on the right side for the moment. 😊7Views0likes0CommentsRe: Sexual Wellbeing and Intimacy (Seeking breast cancer survivor feedback)
No, no member of my team brought up the subject. I was already under going treatment for vaginal dryness and atrophy prior to my hormone positive breast cancer diagnosis and was on Estrogen cream and HRT for debilitating hot flushes and vaginal atrophy which was causing urinary tract problems. I guess for that reason the GP may not have brought it up? I am quite okay with bringing up the subject myself and feel quite comfortable discussing it with my GP and Oncologist when I don't have other more pressing issues to deal with in my appointments. I would like to know what possible options there may be for someone with my history as the vaginal dryness on Femara is causing significant health and emotional issues. The biggest impact has been loss of sensation and pain on intercourse. The fear of pain kills what little desire I can manage and even when we do manage to have intercourse, the lack of sensation is extremely disappointing. Even touch is painful around the vaginal area. I would have liked the subject mentioned as a common side effect of treatment, as much as to help me feel that I was not alone in this, and if there are any possible treatments that may help, to be advised of what they are. I got information about good lubricants and the possible use of topical anaesthetic gel from lovely ladies on this site, but a knowledgable professional with a helpful handout detailing possible treatments would be very helpful. Information seems to be very fragmented and you really have to work to find any answers. Most information about vaginal atrophy just recommends Estrogen creams which are not an option now for me. I have not been back to my Gynaecologist since the diagnosis as yet, possibly he may have more information? This subject is one I am working on, amongst others, with my Cancer Centre based psychologist.25Views2likes0CommentsSurgery on Palbociclib
Hi Ladies, I am scheduled for DIEP/TRAM flap surgery on 6th November. I am 11 months into my 2 year Palbociclib drug trial. Has anyone on the trial had major surgery during the trial? Any problems with infection? I have been advised to stop the drug 7 days prior to surgery by my trial coordinator and not start again until favourable blood tests.133Views1like3CommentsRe: Palbociclib trial ladies(how you doing)
@ JaneyB, thank you for your insights too, from a longer term user it is helpful. I am exercising to get the weight under control for several reasons, less strain on the joints, and hopefully keeping them moving lessens the risk of joint pain with the Letrazole, it seems to work. I was told that fat cells produce oestrogen and if I have to be on Letrazole and put up with the side effects, I can't see the point in sabotaging the benefits it is supposed to produce. Less weight equals lower risk of recurrence, not sure I know how that works, but I am willing to test the theory. I also exercise to combat the loss of muscle and strength due to the chemo and forced inactivity during 12 months of treatment. I ride a horse, so I need to be fit and agile. Exercise improves my breathing. Radiation has damaged part of my right lung and the inactivity during hospitalisation, for two operations and on two occasions during chemotherapy, resulted in collapsed portions of my lungs and frightened the bejesus out of me. The Oncologist said that exercise would help with that. I mostly exercise in a group situation which helps to keep me motivated and also gives me a support group outing at the same time. The more I go to these exercise groups, the easier it is for me to stay focused on healthy eating. Otherwise I tend to slip back into old habits. It also helps hugely with the mood swings and general depression that can descend on me at times. plus it means I can eat some of the things I enjoy and not have the weight pile back on.10Views1like0CommentsRe: Radiation - a whole new challenge
My Radiation Oncologist had me on Flamazine cream when the burns really started. Magic stuff. I used it with the dressings they sent me home with for two weeks after radiation finished. I got a script for 10 tubes for $38.80 from the Rad Onc. The pharmacy had to order it in for me though, they only carried two tubes. I started to feel human and not to need a sleep during the day after about 4 months post readiation. I can now go most of the time as I normally would have, though I have reduced my work load to about half. I am self employed, so can do that. I finished radiation at the beginning of November last year. I would say I am now about 80% back to what I was. Perhaps also I am less inclined to overdo everything and now listen to my body, which I didn't do before, so I guess that affects how much I do compared to before diagnosis too. I found radiation gruelling. I think it was also that it was the last of a full year of treatment, so I was worn down, both mentally and physically. And afterwards also a little bit lost once the routine of constant treatment finished, that contributed to the emotional crash I experienced for a few months afterwards, and still do at times. A lovely client of mine mine who had been through it all a few years before me said, you will have bad times, it is normal. Mine can last a few days before I manage to give myself a shake and go on with renewed enthusiasm. Treat yourself gently, you have been through a lot.4Views2likes0CommentsRe: Underarm soreness after radiation
I too have pain in the armpit and the area in front of it where all my lymph nodes were removed. I finished radiation in November last year. The area under my arm tends to fill with fluid too and has to be massaged to relieve it. I still have some swelling or thickening across the top of my chest where the breast was removed and it is painful at times and down my sternum is very painful to touch, usually okay if I don't touch it. The surgeon suggests it is from severed nerves after the mastectomy and says it is normal. The lymphodema physio suggests deep cording possibly with adhesions. The Oncologist suggests arthritis brought to a head by the Letrazole, yes, apparently arthritis in your chest is a thing? Who knew? It took quite a few months for a bra to be comfortable, and some still hurt. I was told never to wear underwire due to my lympdodema issues. The most comfortable under my arm was the very wide compression bra the Lymphodema physio gave me, but it doesn't have a pocket for the prosthesis. Most bras I find come up too high in front of my arm and cause a lot of pain there even now, it is worse if I don't have the prosthesis in to help pull the bra away from the area. I wore a piece of the cotton padding, that they used to dress my chest after radiation, under the edge of my bra for weeks after I began wearing a bra again. It helped a bit. Perhaps even a thick sanitary pad under the bra in the painful area might help until the pain eases.15Views0likes0Comments
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Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.
