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Esjay
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Re: Radiation Side Effects Broken Skin Tips?
Hello kittykatster , Aww that is so painful and you have a few days of treatment ahead of you too. Strata XRT is amazing cream but I also used another one in conjunction with it & I call it a miracle cream! GOULDS radiotherapy cream comes from a naturopathy in Hobart. It's about $30 for a tub and I used about 1 1/2 tubs. Made from calendula & beeswax, it's more like an ointment..yellow and smelly but works a treat! Very soothing! It stains clothes so I bought some cheap black t- shirts from kmart that I could throw away once it was all over. Goulds Natural Medicine https://share.google/oiHWEWSsssyxsZMwp I used Strata xrt after my shower each morning before I went for radiation sessions, then once I got home I lathered the Goulds generously all over the area. Then each evening another shower (yes 2 a day!) and re applied the Strata xrt for over night. It was a dream remedy. The evidence showed in the patch I missed under my arm...3rd degree burn there!! I still took weeks of healing after the radiation so kept up the creams for about a month after finishing. I did have a skin infection early on that needed antibiotics, & then towards the end I reacted to the cortisone cream they wanted me to use, breaking out in severe exzema and had to use Diprosone to clear it up so it certainly wasn't a walk in the park by any means. But now a year later, my implant reconstruction which the Dr said would almost certainly fail is still thriving & he says he's never seen skin so good after radiation! Not even any tan to show for the weeks of skin trauma. By all means show your radiation oncologist and they will have some suggestions to help you too. Hang in there..you will get through it.5Views3likes0CommentsRe: Lower dose tamoxifen
Hello Shae Note your oncologist said 'most'.They can't say until someone tries tamoxifen how that individual will react. Personally I don't know what she means as I know several premenopausal women struggling with tamoxifen. I certainly can vouch that tamoxifen has nearly finished me off and I'm definitely years away from menopause. If you want to read my full story, feel free to look at my profile as I've detailed my journey there. Just to give you a quick summary though, Two years ago I started 20mg tamoxifen, and slowly but surely over the next 15 weeks it proceeded to shut my brain down. The last three weeks of that, I was a depressed zombie..sleeping 19 hrs a day and couldn't take in information off a page. I had become unable to even get a meal or do my washing. Within 3 days of stopping it, I was almost my old self again! I had a 3 month break from it while I had surgery & went back on a 10mg dose. This seemed better although I was battling brain fog and insomnia, but 6 weeks later I began to bleed heavily and was in excruciating pain during my period each month. Again I tried to endure, but at the 15 week mark I had to go off the tamoxifen as I was now hemoragging and I had to use a drug called TXA to try and control the bleeding while I waited a few weeks to have a hysterectomy (leaving my ovaries). The pathology results of the hysterectomy? A huge 5cm fibroid, polyps, and stage 4 endometriosis! Which I had no symptoms of prior to starting the tamoxifen. Needless to say, I was advised by my oncologist that I needed my hormones and that the risks of taking tamoxifen now outweighed any benefits. Unfortunately, 4 months later I had a recurrence. 6 lumps were found on the chest wall and I had two more surgeries to remove them. I had 3 weeks radiation then back on a low dose of tamoxifen (10 mg x 2 days a week). This seemed to be going well, so at the 15 week mark, the dose was increased to 10 mg x 5 days a week. Once again, slowly but surely down I went again! Severe joint and muscle pain that was even painful when out walking, and would wake me during the night, and then fatigue that meant I was sleeping up to lunchtime each day. I was now in fight mode..fighting fatigue, fighting pain, fighting depression.Not quality of life for looking after a family of teenagers! Three weeks ago, I was told to drop it back, so are now taking 10mg x 4 days and the fatigue & pain has reduced substantially. Even mood swings have improved. It is a constant struggle.. side effects certainly aren't over, but I'm hanging in there! Learning to dance in the rain!2Views3likes0CommentsRe: 2nd operation DCIS
Yeah I agree. Have a chat with your doctor or breast care nurse. Their recommendations are based on years of knowledge and experience. A mastectomy is a big op so you want to be sure. I had direct to implant reconstruction so was a few weeks to recover but I've got no regrets! All the very best.196Views1like0CommentsRe: 2nd operation DCIS
Hello Paulina_gtzr So sorry to hear you're on this journey too! I'm a bit further ahead of you but know only too well the twists & turns that can come along this road. I describe it as riding a rollercoaster blindfolded! I was the same as you..my first op didn't have clear margins, so I went in for a second op but they didn't get clear margins that time either! DCIS can be multifocal and if you have dense tissue then it's hard to see in scans but also hard to see when they operate as well. After my 2nd op, I asked for an MRI as I wasn't prepared for them to have another go at getting clear margins & still miss some. And just as well I did! It showed that the entire breast was diseased and a mastectomy was my only option. Unfortunately my journey didn't finish there.. after two more recurrences , 5 more surgeries, radiation and endocrine therapy I have finally reached a 6 month milestone of no scans or hospitals! I recommend radiation even if you have a mastectomy. People sometimes think that a mastectomy means it won't recur but the radiation really helps mop up any stray cells that could regrow. I hope this helps ..being thorough is always worth while. I'd hate to think of what might have happened if they had got clear margins at my 2nd op. They would have stopped looking further and the rest of my story might have looked far worse a few months down the track! All the best with your days and weeks ahead! There is light at the end of the tunnel!30Views2likes2CommentsRe: Annual screening - mammogram vs mri
It was a 3D mammogram without contrast. It remains a question if they had used the contrast, would it have made a difference in that scenario? Who knows? After trying on two separate occasions to get clear margins, the Dr then used MRI with contrast to determine how extensive the DCIS was and realised a mastectomy was the only option. I also had stage 2 IDC within the main tumour but that didn't show up on the mammogram either. That's why it's so important for those with dense breasts to be made aware of their density so they can get the extra scans they require.81Views2likes0CommentsRe: Annual screening - mammogram vs mri
Hello aj456, Mammogram with contrast or MRI with contrast are usually used for those with dense breasts. In my case, nothing could be seen in the mammogram even when a 7cm lump could be seen and felt! It was the MRI that showed how extensive the disease was and confirmed the need for a mastectomy, so I was glad I pushed for it. I have a 3d mammogram on my good side & ultrasound every year and then an MRI every two years. My doctor is hesitant to do the MRI more often as he says too much 'contrast'(or dye),can cause Parkinson's. Every treatment option has risks so it's about weighing those up. Have a discussion with your doctor and if your gut tells you that you need an MRI , ask for it. Always keep up your regular self checks too.. I've had two recurrences & it's the self checks that did more for me than any scans have!106Views3likes0CommentsRe: Annual screening - mammogram vs mri
Just to clarify & save any confusion... the Mammogram and MRI mentioned in the original question here, are referring to scans using 'contrast', which is a dye injected during the scan to enhance the image and show up any anomalies. This is different to a standard mammogram or 3d mammogram which doesn't use 'contrast' to enhance the image.337Views1like2CommentsRe: Tamoxifen - 5mg - side effects?
Hello aj456, I'm now on the low dose 'Baby Tam' and getting on very well. After a year of nasty side effects that caused the need for further surgery & then a recurrence after stopping the tamoxifen, the 5mg is my only option. I've been on it 12 weeks now and apart from needing to manage fatigue & using exercise to control insomnia & joint issues, I haven't got any complaints. I've finally got my life back after 2 long years! I recommend you give it a try, some is always better than none.192Views1like0CommentsRe: Struggling with Tamoxifen side effects
I'm sorry to hear that @ pinklady71. Glad you are seeing the oncologist again soon. You may need to get your iron, zinc and Vitamin D levels checked if you still are feeling unwell. I was very low in iron & vitamin D and I felt so much better once I started on supplements. A naturopath or a GP can help you get your basic health levels sorted and that definitely helps your body to heal faster. After all our bodies and minds have been through, it's not surprising that we need some extra nutritional support. Hope you can feel better soon!37Views0likes0CommentsRe: Struggling with Tamoxifen side effects
Hello @pinklady71..I share your pain...tamoxifen is an awful drug! Especially when they expect you to be on it long term. Has the Oncologist recommended a smaller dose for you as an option? I'm 10 years younger than you but I did four months at 20 mg and that ended up shutting my brain down , then I tried 10 mg for four months and that ended in a hysterectomy. The Dr then told me to go off it but within weeks I had a local recurrence on the chest wall and needed two more surgeries plus radiation..so now I've started on what is called Baby Tam (which is 10mg every 2nd day) about 6 weeks ago and apart from fatigue I'm getting on well. Trust it continues. The Oncologist has said I can have short breaks from it when it builds up too much. I don't have much option but to continue with it though.. kind of between a rock & a hard place.30Views0likes0Comments
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