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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

Sorry to hear about your husband. Always a harsh wake up call (had one of those myself before I met my husband). I have had MBC for 5 years. I woke up about 6 months ago and realized I was not getting any younger. The Alaska Cruise was on my bucket list so we decided to "gut up" and do it. Since we no longer go to Arizona for the winter, we are spending our "snowbird" money on this cruise. Hope things go well for you. Keep in touch. I do not check this blog very often so if you don't hear from me that is why.

Hi everybody,
Sorry I was busy accepting my latest cancer result & couldn’t be there for you. I was experiencing some strange prins around my right era, inside. I met my oncolog for a month ago and after some x-rays they found that mets have spread on my head bone. They have a meeting and want more & thorough examinations and x-rays, before starting the treatment. For the time being I am on Capecitabin 500 mg pills, hoping to keep my tumors as they are.
Wow, a Cruise to Alaska sounds wonderful. I have no list to what I Wish to do, I just take the days as they are and try to have at least one long walk in the woods for about an hour. Next is to visit our grandchildren as much as possible, read and read and talk to my family. Then I have to do all the tests and more. Nobody believes that I suffer from cancer stage 4 which has spread. I have cancer, so what? I try to find positive thing in my life and the world around me to keep me alive. Of course the anti-depression medication helps more than possible, lol! Love you all,

@saltis

Hi everybody,
Sorry I was busy accepting my latest cancer result & couldn’t be there for you. I was experiencing some strange prins around my right era, inside. I met my oncolog for a month ago and after some x-rays they found that mets have spread on my head bone. They have a meeting and want more & thorough examinations and x-rays, before starting the treatment. For the time being I am on Capecitabin 500 mg pills, hoping to keep my tumors as they are.
Wow, a Cruise to Alaska sounds wonderful. I have no list to what I Wish to do, I just take the days as they are and try to have at least one long walk in the woods for about an hour. Next is to visit our grandchildren as much as possible, read and read and talk to my family. Then I have to do all the tests and more. Nobody believes that I suffer from cancer stage 4 which has spread. I have cancer, so what? I try to find positive thing in my life and the world around me to keep me alive. Of course the anti-depression medication helps more than possible, lol! Love you all,

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Hi @saltis, I’m searching for words to write to you about your recent news about new spread found to bone mets to your skull (if I understood correctly). Everything I could say sounds like a predictable platitude. But words are all I have so I will find some.
I take great strength from your day by day, hour by hour attitude, and apply it to my life. A walk in the woods and spending time with family has been intense focus for me the past week as I spent time at the cabin with family. And I read 3 books. I hope you realize how your words inspire. Thank you.

How many grandchildren do you have?

How are you doing with Capecitabin? Are the side effects manageable?

@saltis

Hi everybody,
Sorry I was busy accepting my latest cancer result & couldn’t be there for you. I was experiencing some strange prins around my right era, inside. I met my oncolog for a month ago and after some x-rays they found that mets have spread on my head bone. They have a meeting and want more & thorough examinations and x-rays, before starting the treatment. For the time being I am on Capecitabin 500 mg pills, hoping to keep my tumors as they are.
Wow, a Cruise to Alaska sounds wonderful. I have no list to what I Wish to do, I just take the days as they are and try to have at least one long walk in the woods for about an hour. Next is to visit our grandchildren as much as possible, read and read and talk to my family. Then I have to do all the tests and more. Nobody believes that I suffer from cancer stage 4 which has spread. I have cancer, so what? I try to find positive thing in my life and the world around me to keep me alive. Of course the anti-depression medication helps more than possible, lol! Love you all,

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Hi @colleenyoung,
Thank you for your mail. Sorry about confusion. I have this auto correction which try to change almost every word to Swedish. The result is always interesting, confusion or laughter… yes you guessed right I have mets on parts of my skull and in one lung. It was expected or at least I thought it was expected. I mean nobody lives forever and now both my body and mind are at peace, a bit sad but I feel ok. They are going to start with Zoledronsyra drops at the beginning av September, every six weeks and afterwards every 6 or 7 months.
Honestly don’t know what to say about Capecitabin. The first 6 months was awaful, I had terrible rashes on my arms, back, under my feet, in mouth, on my skull, hands and bleeding & itching on my clitoris. They tried to give me lower dosage and rashes on my arms and back disappeared but still the skin on my arms shows the traces of those terrible rashes. I easily lost my balance and fell down. I gained liquid in my lungs and was operated twice. Now I take only 1 000 mg per day, without any pause in between. Less side effects but some of them are still there. Now that I have mets on my skull and probably in one of the lungs (I have already three tumors on my breast and chest), don”t know if I continue taking it or change to something else…I have not received the complete treatment plan, yet.
I have two wonderful grandchildren . A smart beautiful girl who becomes 4 in two weeks time and a boy who is almost three months old.. i feel really lucky and satisfied with my life. I have done my best to see the positive aspects of my life and do whatever I can for others. I have lived in war, gave birth while they were bombing our city, lost two unborn childtrn, was forced to seek asylum in Sweden which became our home. Lost a lot of loved ones but every problem, took me to new paths and let me discover the strenght in myself and the love and friendship around me. Have made wonderful friends and mostly have been happiness and laughter in my life. When down the nature helps me with long walks and time to accept my life.
Friends we have so much to enjoy and love to share with others. Share your love and warmth with others, please❤️

Confirming diagnosis this week. Found a distortion on r breast in September 3d mammogram, continues to find that I needed a mastectomy. Three lymph nodes removed from the armpit. Was to start chemo and then diverted to Pet scan. Found suspicious spots in my hips. Having a bone biopsy on Wed. The current plan is hormone treatment for 6 months, then chemo if not responding. The spots found were pin prick size.
Had lumpectomy 4 yrs ago on l side. Caught by surprise to reoccur.
Anyone here with Mba? Feeling a little scared and uncertain.

@jacsmom

Confirming diagnosis this week. Found a distortion on r breast in September 3d mammogram, continues to find that I needed a mastectomy. Three lymph nodes removed from the armpit. Was to start chemo and then diverted to Pet scan. Found suspicious spots in my hips. Having a bone biopsy on Wed. The current plan is hormone treatment for 6 months, then chemo if not responding. The spots found were pin prick size.
Had lumpectomy 4 yrs ago on l side. Caught by surprise to reoccur.
Anyone here with Mba? Feeling a little scared and uncertain.

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Hi @jacsmom, welcome to Connect. You'll notice that I moved your message to this existing discussion about metastatic breast cancer. I did this so you can connect with others members living with MBA, like @rae3 @wandering @saltis @18dee @nancy2952 @nikki727 @lynnydave12 @karenatmayo and others. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Jacsmom, I can imagine that you're feeling uncertain and scared to have the confirmation of metastasis. You'll see that you're not alone. There are others here to support you as you prepare for your bone biopsy coming up and the path ahead. Feel free to ask questions and share your feelings. We're listening.

@rae3

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.

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Hi, I’m in the Clearwater area. I was diagnosed Denovo in June. I’m 42 with 5 and 4 year olds. Are you on FB? There is a group on the for MBC in Florida. I know they are having a Metavivor ball soon.

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