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rae3
@rae3

Posts: 13
Joined: Oct 06, 2016

Metastatic breast cancer: Anyone else?

Posted by @rae3, Oct 6, 2016

Hello…I am new to this site. I had BC originally in 1989 with lumpectomy, chemo and radiation. After 4 months of pains, thought to be muscular from lots of tennis, xrays revealed cracked vertebraes in the spine and led to MBC diagnosis, to the bones. I have been receiving xgeva and faslodex injections once a month since February 2015. One round of radiation in August to the hip eliminated that pain by reducing the tumor. Just wondering if there is anyone out there in a similar situation and how are you doing??

REPLY

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

Rae3: welcome to our group. I suppose not where you wanted to be after 16 years but —. Anyway, I too am getting xgeva shots (every three months) and faslodex every month. My tumor markers are on the rise so my dr is looking into something else. Have an appointment next month so we should have a plan after that. Keep in touch and keep that good attitude.

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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Thanks for responding…I am tolerating the injections quite well for almost two years now. Only side affect seems to be about 5 fingernails have deteriorated on the tips. I started taking Solary brand biotin daily and using Hansen nail hardener and that helps strengthen the nails. I am thankful I can still do many things with the help of pain meds. I am being treated in southwest Florida and have yet to meet anyone with MBC. Nice to know this site is available.

How true…retired moved to Florida and learned to play tennis. The muscle pains I was experiencing were really the return of cancer. I guess I am fortunate for now it is in the bones and not a major organ as yet. I see you have joined recently…is this a recent diagnosis for you?? How long have you been on this regimen?? Interesting that I get xgeva monthly and you every 3 months. I will have to ask my oncologist about that. Hope your next treatment works better. My oncologist tells me there are several other alternatives if need be. Hope the next one for you works better. Keep us updated…

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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Rae: My hair was thinning. In January I started shampooing with a shampoo that contains biotin (can be ordered off the internet). Side benefit: my nails are the thickest and longest they have ever been and my hair is thicker. Different.

@rae3

How true…retired moved to Florida and learned to play tennis. The muscle pains I was experiencing were really the return of cancer. I guess I am fortunate for now it is in the bones and not a major organ as yet. I see you have joined recently…is this a recent diagnosis for you?? How long have you been on this regimen?? Interesting that I get xgeva monthly and you every 3 months. I will have to ask my oncologist about that. Hope your next treatment works better. My oncologist tells me there are several other alternatives if need be. Hope the next one for you works better. Keep us updated…

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I had xgeva shots every month for about 2 years. I then started getting them every three months. My oncologist said the shots lose some effectiveness on a monthly basis and should be done every three months. I also was taking anastrozol and arimedex at that time. I am still getting xgeva every three months but now on faslodex every month. No longer taking anastrozol or arimedex (was taken off when I started getting the faslodex shots). I was first diagnosed with MBC in September 2013. Starting my fourth year now. My tumor marker went up in June which is when my oncologist started me on faslodex. In a bit of flux with the numbers up and down so I will see what happens for my November appointment. Could change everything for me. We may not be able to leave for Arizona if my treatments are altered substantially. I have a lot of faith in my doctor in Montana. He is an amazing guy.

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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What is the name of the product???

Hi @rae3,
May I start with wishing you the most of laughter, happiness and togetherness ever? I have had cancer for the last 21 years. 3 years ago I started experiencing pain on my right elbow. It grew worse day by day. I worked more than 100% the, had a very important position & while working it did’t hurt that much but as soon as I started walking Or at nights trying to sleep. I cried because it really hurt and somtimes I even thought of some kind of injury which could cut my arm off, would be a blessing. After 6-7 months a lump started showing off under my right shoulder. Even then my PD didn’t want me to visit the oncology clinic. After 13 months and more tears at last I met my oncology doctor and it was a stage 4 BC. I got chemo, radiation and hormone treatment. April of this year it became MBC and started growing in two different places in my chest. I could only receive 4 times of chemo as my white cells were scary low. I have been diagnosed HER2 negativ and is treated with Falsodex. In Sweden it is a bit different. They started with three times every two weeks and then every month, until the next cancer reoccurance. I really prefer Falsodex than chemo because there are almost no side-effects. Of course it is quite early to know if it really diminishes my cancers but the nails are still the same. They are almost very darkish from under my nails, 5 of them. My toe nails are still not looking normal after my 18th chemo for 3 years ago but my feet are feeling normal again.
Hope my experiences can be of help. I felt very lonely for a while and tired of being on the edge but this is my life and my chance to live a bit longer. I look around, our beautiful wonderful world and there are many children, youth, people much younger that don’t survive the war, nature catastrophies and still I have a chance to live so I try to make the best of it. @rae3 wish you the best.

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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Not sure what you are asking.

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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Wondering what the name of the shampoo is???

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

Jump to this post

Sorry about that. It’s Avalon Organics therapy thickening shampoo. Contains biotin and b complex. I ordered it off the internet. Much cheaper than buying at a health food store. You have to be patient – it takes at least 3 months to see results – depends on how fast your hair grows.

Liked by kat9606

Hi @rae3 @saltis and @wandering. Just checking in to see how you are all doing. How will you be celebrating the holidays this year?

Thanks for checking in. I am doing OK. Had the stomach flu (while on vacation in Houston). Graciously passed it on to my husband. Have a doctor’s appointment January 4 so every month I get stressed waiting on my “numbers” (CA27-29 – tumor markers). My birthday is Christmas Day (a Jewish child born in a Catholic hospital on Christmas Day – ugh). Will be 72 (cannot believe that). Anyway, the worst part of that is no place to eat out (except Denny’s which I cannot do – not trashing Denny’s but not very elegant for a birthday celebration). Wishing everyone a happy holiday and praying for better health for my fellow partners. Breast cancer has become an epidemic which needs to be cured-pink shirts notwithstanding.

@wandering

Thanks for checking in. I am doing OK. Had the stomach flu (while on vacation in Houston). Graciously passed it on to my husband. Have a doctor’s appointment January 4 so every month I get stressed waiting on my “numbers” (CA27-29 – tumor markers). My birthday is Christmas Day (a Jewish child born in a Catholic hospital on Christmas Day – ugh). Will be 72 (cannot believe that). Anyway, the worst part of that is no place to eat out (except Denny’s which I cannot do – not trashing Denny’s but not very elegant for a birthday celebration). Wishing everyone a happy holiday and praying for better health for my fellow partners. Breast cancer has become an epidemic which needs to be cured-pink shirts notwithstanding.

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Good to hear from you Wandering. I can see how it would be hard to find a place to celebrate a birthday on Christmas Day. I have the opposite. I was born New Year’s Eve – so everyone celebrates my birthday, but they just don’t always realize it 😉

I hope both you and your husband are done with the flu before your birthday. Chag Sameach!

As I get older, I just want my birthday to fade into the woodwork. It is pretty easy to do when everyone else is focused on their celebrations. Dear husband is planning on cooking dinner on my birthday at home. New Year’s Eve seems like a great day for a birthday. As you said, EVERYONE is celebrating your birthday – by choice or not. I’ll think about you next Saturday. Red wine anyone?

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