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Would you share your Stage IV story with us?

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Comments

  • Falconer
    Falconer Member Posts: 801
    edited June 2017
    Dear Mimi,
    What a difficult journey you've had. Thank you for sharing the photo of you and your beautiful smile. Holding you in the light.
  • moderators
    moderators Posts: 8,522
    edited June 2017

    Thank YOU, Mimi2klehHeart

  • goodprognosis
    goodprognosis Member Posts: 195
    edited June 2017

    Mimi

    What a brave woman you are. An incredible story of survival!

    God bless you and I hope you have reached the top of that hill and will soon start to come down the other side.

    Sent with hugs to you and your lovely family.


  • intolight
    intolight Member Posts: 2,340
    edited June 2017

    Mimi, words cannot fully describe my response to your story. The fact that you have gone through all of this and are still fighting is to me, a miracle. You have a lovely family, and I can see the love for you in their eyes. Blessings friend.

  • Idgy
    Idgy Member Posts: 2
    edited June 2017

    Diagnosed in Dec 2016..this is my 4th bout w breast cancer and I am stage lV.

    My cancer is breast to liver. All lymph nodes were removed in previous surgery but one was found to be "tainted"

    Started on Faslodex in March.

    I would be willing to share.

    Nadia

    Edited by Mods to remove personally identifiable information. We strongly suggest never including your full name in a post or signature line to keep you safe and secure.

  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    Thank you Falconer, good prognosis and IntoLight, very kind words. 💜



  • mashahinda
    mashahinda Member Posts: 3
    edited June 2017

    I have a question for people in this forum. I would like to know how, if they had Taxol infusions, they experienced them.

    To me, taking a drug that is very hard on the body could be worth it if recovery and healing is the end result.

    For me, however, there is no cure--I'd be having the infusions purely and only to prolong life, even a life that could prove to be unbearable because of Taxol side effects.

    So, taking such a drug, in order to live sick from the chemo is something I question (for myself), and I'm looking for input from others in such a situation--people who have opted FOR chemo, and people who have opted AGAINST it.

    So, if someone out there is on "end-stage" chemo, I'd very much like to hear your experience, whether you are happy with it, how many days during a cycle you're feeling "good enough," etc.

    Thank you very much,

    Marsha

  • carpe_diem
    carpe_diem Member Posts: 599
    edited June 2017

    Marsha,

    It would help to know your diagnosis and treatment history since that might let me know how applicable my experience is, but I did fit into "end-stage chemo" and probably will again. I've been at this for seven years, if you count the 10 months looking for a diagnosis, including hormonal (anastrozole, faslodex, and letrozole), surgery, radiation, chemo (xeloda, 5-fluorouracil, paclitaxel, and abraxane), and targeted therapy (kisqali with letrozole). I certainly found chemo to be the hardest to take, but I was active and reasonably healthy throughout. My doctor did ask if I was willing to consider chemo, since that's where some of her patients draw the line, but I didn't hesitate since it seemed to me that plenty of people without cancer deal with more severe issues every day and no one suggests that they give up and go gently into that good night. Xeloda is a pill and was convenient to take, but I had severe Hand Foot Syndrome (HFS) almost right away. I could get around all right, but had to stop walking for exercise because of blisters, my hands hurt when opening jars, and the mouth sores required changes in diet. We kept reducing the dosage, which improved things, but eventually I had a progression. Xeloda is a prodrug for 5-FU, so my oncologist thought that might work without as much HFS. It was a real nuisance (although it worked fine on the cancer) but it required wearing a pump continuously for three weeks and my feet weren't that much better. At that point I decided I could live without my hair and Dr. Campbell suggested Taxol. I started with paclitaxel but had a bad reaction to the benadryl/steroids you need to take with it so I was approved for Abraxane. It's the same drug with a different carrier, but more expensive, so insurance generally wants you to try paclitaxel first. The side effects were not awful - some easily controlled nausea and some odd taste problems, but usually just for one or two days a week. My feet were somewhat better.

    I did develop other health problems: atrial fibrillation and leg edema. These might just be age-related (I'm 68), but practically every treatment I've had, starting with anastrozole and including radiation and chemo, can lead to Afib. So I have a new cardiologist and a slew of medications. It hasn't slowed me down much, although walking up hills is a challenge. We've been to Australia, New Zealand, Alaska, Western Canada, Eastern Canada, New England, plus two road trips to Texas and I've always been able to keep up.

    After a year on Abraxane I had a further progression in my liver and Dr. C wanted me to try Ibrance, a fairly new targeted therapy. However, I'd been reading about Kisqali (ribociclib), a similar drug that had just been approved and had the advantage (for me) that it's made by Novartis. My DH is a Novartis retiree and I get it for free. I take it with letrozole, and I really don't have any side effects with it except for mild neutropenia, although my counts have never been low enough to postpone the next series (21 days on, 7 off with continuous letrozole). My feet are much better, my taste buds are back in working order, and I seem to have more energy. I have scans in two weeks so we'll see how it's working, but my tumor markers have been stable.

    I don't know whether you're a candidate for Ibrance or Kisqali, (ER+, Her2-) but if you are currently on hormonals it might help to know that in the clinical trials for women who had progressed on hormonals, Ibrance seemed to work better if it had been at least six months since the stopped them. For me it had been two years, so I'm hoping that the stupid cancer has forgotten that letrozole isn't supposed to work. When I got a second opinion at Sloan-Kettering back in 2012, the doctor there said that cancer cells often "forget" that they stopped responding to a treatment and it may work again after some time attacking them with something else.

    This has gotten really long, but I wanted to encourage you to give chemo a try - it doesn't have to be "end-stage." And there are new drugs in the works that may be worth waiting for.

    Janet


  • cive
    cive Member Posts: 265
    edited July 2017

    I'm someone who wants to "go gently into that good night" so I started with an AI alone and after 18 months moved to faslodex and Ibrance on progression.  I might try zeloda when I progress on this, but I'm pretty much drawing the line at taxanes pretty much because I don't want to go bald again.  Of course that's assuming my insurance company goes along with that.

  • illimae
    illimae Member Posts: 5,704
    edited July 2017

    Saturday, October 29, 2016, I noticed a large egg sized lump while undressing for bed. I had a bad feeling about this since my mother and her sister were both dxd w/BC in the last couple of years in their 60's. I spent Sunday googling and while the odds were low, my lump was hard, immovable and painless, not good. Monday I saw my PCP, he confirmed and ordered a mammo, which was done that Friday. I was worried, at 41, this was only my 2nd mammo, 1st was all clear 18 months ago but my husband (who had been out of town for work) was back and a pillar of strength. Mammo followed immediately by Ultrasound. They want me back on Tuesday for a biopsy, I'm really freaked now. Tuesday's biopsy done and my PCP tells me it's cancer on Thursday. I lose it that weekend and tell my husband he can get remarried, of course he's not hearing any of it. The next week I go to MDA and after more scans and biopises, i am stage IV. I spent the 1st few weeks in shock, I just felt the lump, I was young, active and overweight but otherwise healthy with no knowngenetic mutations how could this happen?

    Then i joined BCO, found education and support, that and a treatment plan helped enormously. I am currently considered oligometastic with a single bone met and my team is treating me with local control. I completed neoadjuvant chemo a month ago, tough but doable am recovering from a lumpectomy, ALND, reduction/lift this week. Next step is SBRT to the bone location, Herceptin and Perjeta forever and with some luck continued good health.

    Cancer may take my life someday but not my sense of humor :)

    image

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2017

    I don't know how you can tell your Stage IV story without telling the whole mess so here it is.

    I was diagnosed with stage IIB in March, 2014 after finding a lump in my left breast on self exam. I found a surgeon I really liked (she did the biopsy) and, after several tests (brain MRI, chest/lung CT) to see if it had already spread (it had not), I had a left mastectomy on June 5, 2014. I opted for no reconstruction. I must mention that I also have multiple sclerosis (MS) so having only one breast seems like a minor thing to me. I was diagnosed with MS in 1991 and have been doing fairly well with that. The MS is not pleased with the cancer and all that it entails, drugs especially. I got through the surgery well, although every time I have general anesthesia, the MS decides to paralyze some body part for a short time. Although the surgery was on the left, this time the paralysis was my right arm. It was unusable for about four months. NO DRIVING for four months. That really slowed me down, especially as it went into the time when I was getting CHEMO. My husband was still working in a very high pressure job (with very long hours) so he had to schedule things accordingly. Messy. He has since retired.

    About three weeks after surgery, I was SENT (I did not choose) to my oncologist. For me, he is an important part of this story. If I were to tell you things he has said and done, you would be appalled. So why didn't I change? There are several reasons. 1. There are not very many oncologists where I live and mine is probably the best medically. 2. His nurses and support staff are the BEST. 3. I got used to his location and routine and didn't have the energy or motivation to do whatever needed to be done to change. The longer I go to him, the more powerful that last reason becomes. How do I change now after three years? For some reason I don't really understand, I can't.

    I hemmed and hawed for all of July 2014. I saw this oncologist several times. He would push me a little harder each time to decide to start chemo. I hesitated because I knew what would happen. My gastrointestinal system works poorly. It may be due to MS or IBS or who knows but I have serious problems. Abdominal pain and diarrhea are normal. I had a pretty good system for controlling these symptoms in place when I was diagnosed with BC. I knew chemo would ruin the years of experimentation and pain that it took me to get there. But still, I took the plunge. On Aug. 5, 2014, I had my first of what was supposed to be six TCH treatments. I felt REALLY bad three days later. I could not stay awake for five minutes and when I was awake, sat on the toilet and cried. I had severe abdominal pain and diarrhea. It was Friday, of course (all medical issues happen on Friday), so I called the 24 hour number and ended up talking several times to my MO's partner. He talked me through the weekend, giving me ideas for symptom relief. I felt well enough a week after that first treatment with all three drugs to go back for Herceptin alone. Herceptin never made me feel worse or bad at all but with all the SE's of TC, it was hard to tell. I did the two weeks of Herceptin alone and tried to prepare for another round of TCH. My MO was NO help with SE's. He basically thinks I bring them on myself due to anxiety and just knowing about them. I agree, and I'm sure there has been research, that you are more likely to have SE's that you know about. But you cannot blame it all on that. I decided to be totally honest with doctors when I started this journey so I told my MO that I take an anxiety med (Ativan) for sleep. I also told him I take an antidepressant (Remeron), also prescribed for sleep. So he decided that he had a depressed, anxious patient who already thought she would have gastro side effects and, of course, I did. He always blamed that on me. At least it felt like that. I got sick even sooner after the second round of TCH. That was Labor Day weekend (of course) and I finally went to the ER on Friday night. I was admitted with colitis and stayed until Sunday afternoon. I didn't really feel any better but they knew it was SE's of the TC (at least someone did) and sent me home. I made it to the Herceptin a week later and told the MO I might have to stop. We waited while I did another weekly Herceptin and then I pulled the plug on the TC. He offered me TH alone but I thought the T was a huge culprit in the SE's. I finished the year of Herceptin. I also had radiation to my left chest wall for about six weeks (every day) from the beginning of Oct. until mid Nov. 2014. That went really well due to great techs and an RO I really liked.

    From Feb. until Aug. of 2015, I took Tamoxifen. I stopped because I was having non-stop UTI's since right after chemo. UTI's are an MS thing. I've had hundreds. I thought the Tamoxifen was contributing to that so I stopped after about six months. The UTI's lasted for about another month, then stopped. Cause and effect? To me, it was. To my MO, not so much.

    Herceptin requires echocardiograms every three months because of possible heart side effects. In April, 2015, my regular echo showed a pleural effusion on the left. Chest x-ray confirmed it. I had my first of six thorasenteses in May. I had one every four to six weeks for diagnosis because no cause could be determined. Each thoracentesis was followed by a chest/lung CT to follow a few small lung nodules I had had since the very beginning when those tests were done before surgery. My MO tested the pleural fluid for EVERYTHING. All negative. I started keeping track of the amount of fluid drained and the days since my last one. I calculated the amount of fluid forming per day. It kept going down until it was very little. BUT, in Feb. 2016, more and larger lung nodules were seen on the CT (both lungs) and also a small "spot" on my shoulder bone. I don't remember which one and still don't know. In March, 2016, the one lung nodule that was big enough (one cm) to biopsy showed metastasis.

    MO said I could take an AI or an AI with a new oral chemo called Ibrance. My Medicare drug insurance would only cover Ibrance if I took it with letrozole so that's what I am taking. I've been on it for 15 months and every three months, I have a PET/CT scan. All have been ok so far. Nothing is getting smaller (except the effusion) but nothing is progressing. I feel ok most of the time.

    The original cancer was HER2+. The mets are not. Herceptin?

    I have two older sisters. Both had breast cancer. One was six years older than me. She was diagnosed at 43 (1986) and died at 48 (1991). The other, two years older than me, was diagnosed with stage 0 at 57 (2004) and is doing fine now at 70.

    I have a 32 year old son who just got married this past Nov. He is the light of my life.

  • bigbhome
    bigbhome Member Posts: 721
    edited July 2017

    Janet - I am so sorry to see you here but must tell you, these people are wonderful! So carting, supportive and knowledgeable. You will find so much support and information.

    That said, your story sounds terrible. How can you deal with a MO who you don't trust and vice versa? Your MO doesn't have to have a great bedside manner, but he must have compassion and knowledge. He is your partner in a battle for your life.

    I understand how difficult it is to change MO's, I changed mine after 10 years. It was very hard. She had a wonderful bedside manner, however, I started to feel like details were being missed, and as we all know, God is in the details. When I switched I researched for a year before I found someone I thought would work for me. My current MO is huge into research and pays close attention to ask the tiny details.

    I am hoping a mother woman from NM, who is very knowledgeable will see your story on here and maybe have ideas for you.

    There is also a topic for women with other issues on top of mbc, including MS that would be worth you taking a look at.

    Hugs and prayers

    Claudia




  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2017

    Thanks so much, Claudia, for the advice. I spent some time here when I was first diagnosed in the "starting chemo in Aug. 2014" thread. When I quit chemo, I was too embarrassed and depressed to stay there. I also was too jealous to go back after they all finished chemo. I was hoping for great things for all of them, especially to be cured, but that concept is very foreign to me. I knew I would feel out of place. After my stage IV diagnosis, I knew I would come back but had to get my MS forum people to encourage me. I've known all of them for 20+ years and feel so comfortable there. Now I am also here, which is great. I spend most of my time on the Ibrance thread but also pop in on Kandy's thread. I have a friend on my MS forum who has an adult daughter with Down's who was diagnosed with celiac this year. I felt an affinity for Kandy because of that.

    My MO doesn't have good bedside manner or compassion. He is a good scientist, though, and I do trust his medical knowledge. No, he does not trust me. I told him at the beginning that I was a scientist, too, and I find that some doctors react negatively to that. He doesn't like that I research things. He likes his patients to be oblivious and just do what he says.

    I have checked the comorbidity threads and they are not very up-to-date or active. The posters seem to be focused on either cancer or the other issue they have. It is very difficult to focus on both. Because I am stage IV and I tolerate my MS fairly well, I focus on cancer.

    I get amazing information and support here and feel very lucky that this board exists.

  • Schooni
    Schooni Member Posts: 1
    edited July 2017

    I was diagnosed with stage 1V in March 2017 and on quite a journey. They insisted I have a pet/ct scan which it turns out proper protocol was not followed before and during scan. Also core needle biopsies of tumors can spread cancer cells through bloodstream and lymph system. If you have a palpable tumor have the whole thing removed. They busted up my 3.1 cm tumor with CNB. I begged the dr not to do it. I wanted the entire tumor removed .. Anyway the pet scan comes back saying I have over 9 hotspots - they say cancer- metastatic TNBC. I am stunned but not surprised. I didn't know at the time that they did the pet scan Wrong. Only 3-1/2 months later I get in to Mayo Clinic - up until then I refused aggressive chemo which could not cure but only shrink cancer - but I did not want to poison my entire body. I was diagnosed at this time stage 4 terminal. Three months laterMayo redid the Pet/Ct with the proper protocol - no carbohydrates 24 hr before, no caffeine 12 hrs before, no chewing or talking excessively - remain quiet 1 full hour before scan - it was done right this time now I know the good Lord may have healed me too - but I am convinced the non protocol- pet scan earlier- showed it in places it wasn't..so over half were gone three spots in chest area but may not even be cancer- they don't know for sure- and the spots in my colon turned out to be no cancerous polyps When they looked at second scan - they thought I had had treatme.nt but I did not take any chemo or radiation just natural stuff and prayers! Question everything Don't let them do a core needle biopsy on tumor get it completely excised. After they biopsies my breast turned purple and the tumor broke into pieces I H haD to wait over two weeks for my mastectomy it's unbelievable this was done at a local hospital in Virginia

    A

  • moderators
    moderators Posts: 8,522
    edited July 2017

    Hello Schooni, and welcome to Breastcancer.org! Your story is pretty amazing, and we're sure will be of help for other community members and visitors. Thank you so much for sharing! Would you mind sending us a photo to include with your story? A picture of yourself would be fine, or something that represents you, if you wish to remain anonymous.

    Again, thank you for sharing and welcome to the Community!

    Best wishes,

    The Mods

  • tina2
    tina2 Member Posts: 758
    edited July 2017

    I am puzzled by the Moderators' response immediately above.

    I am surprised that the Moderators of this thread would encourage a poster to doubt the advice of her medical team, and to promulgate the long-discredited myth that tumor biopsies cause cancer to spread. It's just not so.

    The Mods state "Your story is pretty amazing, and we're sure will be of help for other community members and visitors."

    No it won't. It may actually be of harm.

    Tina


  • moderators
    moderators Posts: 8,522
    edited July 2017

    Tina2, yes, you are correct about the biopsy and spread of cancer (See here) https://community.breastcancer.org/blog/what-my-pa..., and we should have posted that. We always have editorial review any story before it is shared. Thank you for pointing this out however.


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2017

    I noted the same thing, Tina, but am not as brave as you are to post it. I also have questions about the Pet/CT protocol mentioned by that poster. I am told to not eat after midnight and only drink plain water. Nothing about carbohydrates or caffeine. I've had two different techs. One does not even permit reading in the hour before. The other talks non-stop (and I answer) and lets me walk to the restroom a hundred yards away. The first one did not want to use my port for the radioactive material injection. He said they only use it as a last resort. The second one likes that I use my port. What's the deal with that? I would never encourage anyone to not trust their medical team but I have doubted my doctors more than once. And I don't really have a team. Team implies that they talk to each other. Mine doctors don't.

  • bigbhome
    bigbhome Member Posts: 721
    edited July 2017

    jaycee49 - I just had pet/ct yesterday, one of many. My schedule comes with instructions, no alcohol 24hrs prior, no high sugar content, no carbs and no strenuous exercise. 1 hour before, you go into recliner in dark room and rest. No talking, no reading. Try this next time.

    You go Tina! Thanks for keeping everyone on their toes!

    Hugs and prayers

    Claudia

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2017

    Claudia

    I don't drink alcohol. I'm already wobbly enough (MS). I don't eat sugar since I am in a constant battle with yeast. I can't do strenuous exercise due to MS and other things like just falling apart. Carbs I eat but not much. They turn into sugar at some point. None of these issues would cause me to act differently before a scan. Sitting still (not reading) for the hour before can be done. It would definitely change my mo. Would these things then make the scan more accurate? I would like my scans to be accurate. If it is so important, why isn't it insisted upon?

  • Stg4bc24
    Stg4bc24 Member Posts: 1
    edited August 2017

    Hi, I just found out today that what we thought was probably stage 2 invasive ductal carcinoma is actually stage 4/metastatic with the cancer spread to my liver and bones ( found out due to the PET scan I had right before port placement today). I'm 24 and it just seemed so unexpected and fast how everything developed and I'm just wondering if anybody near my age on here has gone through the same thing. How did you handle it? I'm trying to keep a positive attitude but it's just been a lot of information/bad news being given to me in the 6 days since I was told I had cancer originally. More stories would be helpful because I can't seem to find many for metastatic bc at my age. Any information would be amazing. Thank you in advance!

  • moderators
    moderators Posts: 8,522
    edited August 2017

    Stg4bc24, we're so sorry you find yourself in this situation, and at such young age! But at the same time we're glad you've joined this wonderful Community where we know that you'll get tons of support and understanding.

    We know the beginning is so confusing and overwhelming, but once you start your treatment things will get better. Also, staying connected here will help you realice that many members are living their lives with Stage IV breast cancer and doing well, all things considered!

    Until you get responses here from other members, you may also consider posting in the following thread: ladies in their 20s with mets, or start your own topic under the Young With Breast Cancer forum.

    Hope this helps! We're thinking of you. Keep us updated, please.The Mods
  • Kkrenz
    Kkrenz Member Posts: 76
    edited August 2017

    I was diagnosed on March 30, 2017 Stage 4 right out of the gate.  I am 48 years old with multi-focal, multi-centric overlapping bilateral IDC.     While not completely surprised about the diagnosis, I was absolutely floored that it has spread so far and wide.  I have been having annual mammograms since I was 25--as I have a strong family history of BC.  I was doing everything that I believed were the "right" things to do.  I did monthly exams, I never missed a mammo, my family had gene testing, but I still ended up here.  I was diagnosed with 7 liver tumors and widespread skeletal mets.  In fact, so many bone mets that the PET scan finally just said "innumerable".  I was beyond devastated.  Since that time, I have discovered that, given my family history, I should have been having MRI's every 6 months.  No one told me.  Every doctor I have seen for the last 23 years knew my history, and still no one told me.  I feel betrayed by the medical community in some ways.  I was also told that if the genetic testing was done a while ago (we had ours done initially more than 10 years ago), that it should have been done again.  Once again.....no one told me this!  So now, I tell everyone that asks about my cancer about 3D mammos and familiy history, etc.  I live in a small community and my story has inspired many, many women to  have 3D mammos, and a few to have their genetic testing re-done.  I know it's expensive, but what is your life worth?

    On to better news.  After 3 treatments of Taxotere, Herceptin and Perjeta I have had a complete pathological response.  No active cancer anywhere and my tumor markers are almost 0.  I feel blessed to have achieved this, and I treasure every day!  I know NED can be fleeting....but I'm happy I am at this point now.  Bless you all!


  • intolight
    intolight Member Posts: 2,340
    edited August 2017

    Kkrenz, what an amazing recovery! I love the success stories and celebrate with you.

  • babs6287
    babs6287 Member Posts: 1,619
    edited August 2017

    KKrenz. Best news !!!! Celebrate🎉🎉🎉🎉

    Bab

  • Suslev23
    Suslev23 Member Posts: 3
    edited September 2017

    I am 28 year old (diagnosed at 27) in January 2017. ER PR + HER2- Mets to lungs, liver, spleen (random!) chest wall. I had 7 rounds of chemo, 4 AC and 3 T; doctor decided not do last round as she didn't think it would shrink it smaller. However they were happy with results! Started letrazol and Lupron shot in May. Last scan showed growth and high suspicions of lymphangitic carsinomatosis. However I wasn't symptomatic so doc decided to give tamoxifen a shot JUST in case it works. I think she likes to save treatment to keep our tool box full since I'm in this for long haul. Anyway I got a cold yadda yadda now I'm very symptomatic. Short of breath, coughing.... soooo plan b is to start xeloda.

    My doctor has tendency to never show concern so I left my original appointment thinking it was bad but not terrible news. Then of course google lymphangitic bla bla...

    Sooo it's only taken me 8 months to reach out, thus here I am! I am beginning to come around to the idea that maybe it's time to stop working and spend time with my family etc, not giving up but just want to spend my time with my poor family! I feel the worst for them.

    I don't really have a question other then, anyone going through similar situation or just wants to share good vibes!


    Also it won't let me post a pic!

  • moderators
    moderators Posts: 8,522
    edited September 2017

    Suslev-

    Thank you so much for sharing your story with us. Being diagnosed as stage 4 at such a young age is especially difficult. If you'd like to include a picture, you can send it to us directly using the private message function. You can attach or upload a picture with the image icon.

    Thank you again for sharing, we look forward to seeing you on the boards!

    The Mods

  • chelleg
    chelleg Member Posts: 396
    edited September 2017

    suslev, you have found a great group of people here on bco. I have been dx. For two years now. I could not have done this without their knowledge and support!!

    Never give up hope! After two years on tamoxifen, I am NED!!! I never dared to hope that I would have that result. Yet, I have...hang in there!! There are many young ladies on bco. I hope you can connect with them in a similar situation.

    Love and hugs Chelle.

  • Maggiemoo63
    Maggiemoo63 Member Posts: 7
    edited September 2017

    Kkrenz:

    Congrads on being NED. I was as well told stage 4 in May 2017 and after 6 treatments with the sdame drugs as you are taking) I am also NED for now. It spread to my liver and nodes. Celebrate!

  • Djankord1
    Djankord1 Member Posts: 5
    edited September 2017

    Hi, I found a lump on my left breast nipple in January of 2013 and went to the doctor to have it checked. He could not feel the lump, so he sent me to a gynecologist and she could not feel it either. I had a mammogram and they found something, but not the lump I was feeling. I have had a mammogram every year since I was 30 and I am now 54.

    So I was sent for a biopsy of the spot they found. No fun. I mentioned the other lump and the radiologist decided I should have a MRI, which of course showed the lump I was feeling. So then I had to have another biopsy, and that procedure was even worse. But I am a very tough cookie most of the time. They were both malignant, so I decided to have both breasts removed so that I would not have to worry about getting cancer in my right breast. That was in July of 2013. Afterwards, they told me my lymph nodes were clear and I did not have to have chemo or radiation. What a relief. I felt so lucky and I thought I would never again enter the Cancer Care Institute. The doctor told me to come back every year for a checkup and then I would have a MRI in five years. The checkups were pretty much just talking to the doctor. I was told to skip my third checkup because I was doing so well.

    Then in February of 2017, my back started to hurt. I went to the chiropractor twice and had massages also, but still had pain. I ended up going to the Urgent Care Clinic and the doctor there thought it was my spleen or liver and scheduled a CT of the abdomen that day.

    My back continued to hurt and I decided to get a second opinion within days of the Urgent Care appointment. This doctor suggested a MRI, which of course showed that my back was full of cancer, my ribs, pelvis, femur and clavicle, as well as my spine. I could not even look at the image because it made me sick to my stomach. My Mom was with me and we both started crying. She told me she wished it was her and not me. I went to Mayo Clinic for a second opinion, and they agreed with my doctors.

    My pain became worse and I had a compression fracture at T11, so I had radiation in that area. The pain was almost unbearable when I tried to get up off of that flat table, but eventually the pain subsided.

    Then on May 5th, I woke up and had to use the restroom. I tried to turn over and screamed in pain. I couldnt even make it to the restroom before urine started running down my leg. My son took me to the ER and my Mom and Dad met us there. I felt so bad that my family had to see me in such pain. After three days, they got my pain medication figured out and I went home. I had another round of radiation to my lower back, 10 treatments.

    Since then, I have had little to no pain thank goodness. But heavy depression because I cannot work and it feels like the world is revolving around me and I am slowly sinking into a pit. Life goes on, but not for me. I don't feel like I can volunteer because some days I do have pain and have to take my morphine. I have to rest a lot, but that is probably because of the Letrozole and Ibrance, as well as the morphine and Flexeril.

    Lots of information, so I will continue another day so you don't get too bored!

    Deb