Going from stage 2A to stage 4

Hi Ravenhildur,

As you can read, we have a very active stage 4 group You are not alone. You may want to start by reading some of the existing threads, and jumping into the conversations. Sending you hugs

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Hi Raven (Serb), Welcome to our stage IV threads. I am sorry that you are now stage IV, but you have come to the right place. I can see your information now, but it doesn't have any info about your stage IV diagnosis or treatment. Have you started treatment yet or know what your treatment plan will be? Where have the mets shown up -bones, lungs, liver? I ask only because it will help us guide you to some threads that will be most helpful to you. In the meantime, I will give you a little background about myself. I was diagnosed Stage IV denovo (never had lower stage bc) almost exactly three years ago. When it was found, it had already spread to bones throughout my body, skull to tibia and just about everything between. I was started on Arimidex and monthly Zometa. I experienced stable results and even some shrinkage of my breast tumor. After 13 months, Arimidex failed, and scans showed progression in my bones and into my liver. My medication was changed from Arimidex to Ibrance and Faslodex, and Zometa infusions decreased to once every three months. I am still taking those medications. During my 22 months on Ibrance and Faslodex I have seen good results, improvement and stability, my two favorite words. Through the the past three years, my life has changed little other than regular blood tests, scans, and doctor appointments. I feel good. I am living my life and appreciating every day. I know that if I progress on my current treatment, there are many others out there for me to try. Each of us is unique, and so are our experiences and responses to treatments. Do not pay any attention to statistics that you might see. They are outdated. There have been major advancements in the treatment of MBC during the past several years, and they are not reflected in that data. New treatments are being developed and tested every day. I plan to stick around for many years. There are many supportive people on these boards. Others will greet you soon. Once we know more about your diagnosis and treatment plan, we can guide you to other threads. In the meantime, try not to be too scared. There is much hope and love here.

Hugs and prayers from, Lynne

Raven, I can understand why you were blown out of the water. That is not news that anyone would expect to hear. Once you have all the results, you will have a clearer picture of what is going on, and you can get started on treatment. In the meantime, even though you don't know what the findings will be, if you want to do some reading, there are threads for lung mets, liver mets, and bone mets. I realize that you might not have mets in some or any of those locations, but I wanted you to be aware of the threads anyway. I attached the links below. I follow and contribute to the liver and bone mets threads and follow the lung mets one as well. Once you know your treatment plan, there are medication-specific threads that might help you understand common side effects as well as others' experiences with particular treatments.

I know it can be overwhelming, but there have been people with mets to bones, liver, and lungs that are now many, many years out from diagnosis. Some people reach NED (no evidence of disease) or NEAD ( no evidence of active disease. I have never attained that status, and maybe I never will, but I am still doing well. My liver mets are now difficult to see on scans because they are so tiny and could be inactive. The tumor in my breast no longer shows up on scans even though it was not surgically removed. My bone mets are stable and do not cause me any pain. Chances are, I will see progression again some day. It could be next week or years from now or never. On these threads we are seeing that longer and longer survival times are becoming the norm. No one can guarantee good responses, but no one, even the healthiest person on this planet, is guaranteed a tomorrow.

Please let me know what you find out on Wednesday. I will be thinking about you. There are many people here ready to support you and help you through whatever comes.

For lung mets:

https://community.breastcancer.org/forum/8/topics/...

For liver mets:

https://community.breastcancer.org/forum/8/topics/...

For bone mets:

https://community.breastcancer.org/forum/8/topics/...

Hugs and prayers, Lynne

Hi Raven, I can so identify with the feelings of dread and inevitability you must be experiencing now. This is all such a shock, we were not made for this kind of thing. I was diagnosed with livermets February 2017, they responded well to the chemo and herceptin, and currently there is no active cancer detectable. Off course one lives with the knowledge that that can change, so life is different in that the 'carefreeness' of ignorance is gone. But I am here, happy, grateful and still fit and able to the things I could before treatment, just with a fair measure of fatigue thrown in (: My point is life has changed for you, but it can still be good and wholesome and much longer than you anticipate during this phase of coming to terms with reality. Hang in there, once the treatment starts and your body responds, your mind and heart will feel hopeful again xx

The doctor will numb up your skin and deeper to,place the port. First they will scrub the area for a few minutes. They will give you some IV medicine to relax you but you probably won’t be totally asleep. If you have any pain during procedure be sure to speak up. There will be the paper sterile towels laying gently over your face so don’t let that freak you out. It will be sore for a couple of days.

I love mine. Knock on wood, no trouble in 5 years. Ask for the Emla prescription to use on the site before your infusions. It deadens the area and you don’t feel the needle go in at all. I find at least an hour is needed for full numbing. Many women cover theirs with Press and Seal. I ordered tegaderm from amazon and use that. Don’t rub it in. Put a glob about the size of a quarter where you feel the hub.

I know you are devastated with your diagnosis of all your mets. To give you hope, I had over 50 in my lungs.Now I have only 6-7 that appear to be sleeping.....I’m 66 this year, don’t feel great but I feel good enough to make trips, visit with family etc. Some of not feeling great may be from being 66 and worked on my feet as a Nurse my whole life.

There is hope. Hang on to that

Hi Raven,

I got my stage iv diagnosis in Jan of this year and had never had any cancer before. I was shocked and so scared in addition to my physical weakness and misery of not being able to breathe, talk, or walk more than a few steps. I have mets to bones and my liver too. That day the first oncologist who came to see me in the hospital kept repeating "There is NO cure," over and over and told me I'd probably die in a year since I probably couldn't tolerate the treatments. That got me good and angry and I got another oncologist right away!! He's been great so far.

I had a port put in at the same time they put a temporary drain tube in my right lung so I was asleep for that. I'm so glad I have a port. I had Taxol chemo once a week for 12 weeks. It made me tired and I lost my hair after a few doses. However, I was in such bad shape already that I barely noticed. I did not ever have nausea because they prescribed medicine to take. I was careful to take it according to their directions. After a few weeks I started feeling better with my breathing and just felt better in general. Your chemo team will help you! Ask them questions and let them know if you have any problems. I had the kindest nurses for those weeks.

Now I am on my third cycle of Ibrance and Letrozole. I had to have bloodwork every couple of weeks when I started the I & L. Now I go to the cancer center once a month for a shot to help my bones, Xgeva and for bloodwork. Your doctor will know what medicine you will need after chemo.

I'm doing well, so far, but I know there are other things to try if and when this fails. Even though I am still tired and weak, I feel better and I'm walking for exercise again, starting small and going a little farther each day. I can talk and eat. I can do some small chores like putting away the clean dishes and folding clothes. Early on in my treatment I never thought I could do these small things again. I'm not back to normal strength and may never be but I'm going to try. I want to see that awful oncologist in two years and show him! Also there is a lot of research happening for MBC and I hope "the" answer will soon be found.

I do know how you feel. It will get better. When you feel able, check in here and on those threads that 50's girl linked for you.

Hi Serb4,

I have a grown son and a very supportive husband. I'm very lucky.

I'm not able to work.

I think your cough and shortness of breath will get better with the Taxol. For me, they gradually improved after a couple of months. I was on oxygen 24/7 starting in January and I had thoracentesis several times and pleurocentesis to the right lung before chemo started but I still had an awful time not being able to breathe. The chemo helped. I still use oxygen at night and sometimes during the day depending on my O2 level. I'm only a few months into this serious disease but wanted to answer your first post to let you know there's hope for improvement.

On this board all our posts are visible. There is an option for a private messages but I post so seldom I just stay on the public board.

Hi Raven,

I am also 56. My husband and I have been together since he was 16 and I was almost 18. We'll be married 35 years in October. Our kids were born in 86, 87, 95, and 90. My youngest was 10 when I was first diagnosed. I remember him not wanting me to give him a hug as I was leaving for work. He said he didn't want to catch cancer. I hadn't even thought of telling him that cancer wasn't catchy. After I told him that, he gave me the biggest hug. We also have 3 grandchildren. A granddaughter (from our eldest, a son) who is 8 1/2, and 2 grandsons (from number 3, a daughter), they are 7 and 5 1/2. They are all what keeps me going.

I am currently on Taxotere (I've been on it for a year now). It's in the same family as Taxol. I also get Zometa (a bone builder) once every 3 months (I got it every 4 weeks for the first 2 years).

I too have planned my funeral and burial. I did not want my husband and kids to have to deal with it. I took out my retirement fund and paid for my cremation, bought my cemetery plot, and am working on my gravestone right now. I still have to write my obituary for the newspaper, but that shouldn't be hard. It took my husband a long time to decide what he wanted to do with my ashes. I asked if he wanted an urn for the house or to be buried like my Dad (although my mother, and 2 of my sisters decided to keep some ashes, my other sister and I did not want any, our's are in the ground with him). Our plot is right next to my parent's (Mom is still around she's 80). I was surprised it was still available, considering Dad passed 13 years ago (4 months before I was first diagnosed at 43). My husband knows I don't want a wake, just a funeral at the church, and use the rest of the money for a big bash afterward.

I wanted to keep my diagnose private too, but unfortunately, I have some big mouths in the family (my husband's side) who told other people. I told my closest friends, and told my big mouth one last, so I would be the one that told the others. I've told other's as I saw them. Most of my "friends" on facebook don't know. They are people that I went to school with or other acquaintances, not really friends. I've only had no hair for a year (this current chemo is the first I've lost my hair with). We recently took our kids and grandkids to Disneyworld, and I posted pictures with a hat on. Well a couple of friends from high school asked me if my cancer came back (I said yes, 6 years ago! LOL). I guess they could tell I didn't have any hair, even with the hat! Now I look the part. I didn't look any different before, so people would think I was fine. I will talk about my cancer and future death with friends and family, and they will tell me to stop talking like that, you're not going anywhere soon. How do they know? Only place I can really talk about this is on here. We're all in the same boat, and the support from others on here is wonderful! Only support group I need.

You were right to get rid of that first oncologist. What a jerk! I had asked my oncologist what the average life span was once diagnosed stage 4, when I first was diagnosed in 2012. I told her I knew everyone was different, I just wanted the average. She told me 2 years for just bone involvement and 1 1/2 with also organ involvement (I plan on being way above average!). In the next breath she told me that she had 2 women 10 years out, and that one was still working. I asked her at my last appointment if those women were still going. One is, so that makes 16 years out, and she has another that is 14 years out. When I was first diagnosed Stage 1, I just wanted to see my younger 3 graduate high school. Now I want to see them all get married (only number 3 is married, 6 years) and settle down, and see all of my grandchildren (I know there will be more!). Keep looking for something that you want to see in the future! There is hope!! That's what I hold on to!

This week is my good week. Next Mon I start the Decadron (a steroid I have to take since I had a bad reaction with the first dose), twice a day 3 days before and 2 days after (the give me a 15 min iv dose too, a half hour before my chemo). I don't get much sleep while I'm on it, so I'm Miss grumpy and exhausted. I get the chemo every 3 weeks, and see my oncologist the week before for bloodwork too. I saw her today, I'm a little neutropenic, but my red cells and platelets were good. The white cells are always back up the following week for chemo (Thursday). I then feel good for the 2 days after (because of the steroids), then I get thrush (from the steroids) so I don't eat much, I have diarrhea, and I'm dizzy for a week. I'll stay on this chemo still it stops working though. The longer I'm on each one, the longer I'm here. My tumor markers jumped up last time, so they checked them again today. They won't get the results until Monday though. My oncologist said that she has a patient that every spring her markers went up because of her allergies. Maybe that's my problem too. We'll see. I just had scans done a month ago, and they didn't show anything new, so she's not too worried. Just keeping an eye on things.

Yes, please let us know how things are going for you. I'll do the same.

Hugs to you and your family!

Lynne

Raven,

Hang in there. We are praying for you.

Hugs and prayers go out to all my breast cancer sisters everyday too. I agree Kimchee, where is our cure?!

Raven take a deep breath, and take one day at a time. None of us know how much time we have left. I thought I was going to be gone at a year and half, 2 years at most. Here I am, 6 years later. They can't tell you either. Just keep finding things that you can look forward to in the future. Things that make you happy. Big hugs to you! I hope that cough gets better for you!

Raven,

Please come to my chemo center with me! Each station has televisions, and people blast them. There are headphones available, but the nurses don't ask the patients to wear them.

Remember how back in the day when everyone smoked, and no one thought twice about how their fumes infiltrated the space around them, affecting other people? It's the same way with noise now. In a crowded situation, who takes a call when they can text? I text because I don't want the folk next to me knowing my business.

One time, the station next to me had ten visitors in it. Ten. It was like a clown car.

I had a lovely pair of noise-canceling headphones, but they broke. I'm thinking that it is time for a new pair.

Heavy sigh. I'll keep being the b*tch that asks you to turn down your television when I'm in the station next to you. I need to have as much quiet as possible so that I can focus on healing, and all that.

Jennifer

Raven, so sorry you had to go through that. I wish I can get you this T-shirt to so they know when the "Quiet Woman" has arrived!