Would you share your Stage IV story with us?
Comments
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I just returned from my 3-month appointment with my onc and I wanted to send some positive news for those who are struggling with a Stage IV dx. My onc told me I am doing as well as anyone possibly can with Stage IV. There is no evidence of any cancer activity (I had extensive bone and liver mets) and only 1 lymph node is still enlarged at 2 cm. She said she won't use the word "remission" or NEAD as it can have multiple meanings and I still have lymph involvement, but she is extremely happy with my progress. She is keeping me on the same ibrance regimen because of my history and it is working for me, but we are treating it as a chronic disease that we can manage for now. It is still tough, and I have the fatigue and everything else we all rightfully moan about, but it gives promise that I have much more life to live. So hang in there as it is possible. I am also a great believer in the power of a mighty God whose love is free to everyone.
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intoLight, I am so happy for you. We are all so much in need of such good news. Thank you for sharing it and giving hope..
Love, Karina
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I am so sorry.
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"I am also a great believer in the power of a mighty God whose love is free to everyone."
This gives me much hope.!
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Hi. My name is Tammy. I am 57 years old. I was diagnosed with stage IV on August 3rd, 2017. It was a whirlwind. I have been a very healthy person my whole life. I have had a very stressful year though. I had lost my 33 year old son in a very horrific way in February and part of me wonders how much that affected my health.
I went for a yearly checkup in July. Scheduled my mammogram for a couple of weeks later. They were concerned and scheduled an ultrasound for the very next day. Things moved very fast. Biopsy of the breast. Wait 3 days, visit with my gyn. She had already set up appointments for me with an oncologist and a surgeon. My oncologist is very to the point and very thorough. Scheduled CT scan, bone scan, and pet scan. I had all of these scans in just a few days time. Met with oncologist and discovered I had one bone met on a rib. I'm thankful that that is all. So I was shocked when it became stage IV.
Treatment plan changed. I was first going to have chemo to shrink the tumor some before having surgery. After finding the met my doctor started me on oral meds right away. I am taking Kisqali. I believe this is a very new drug as I have not found this on this site anywhere. Along with femara and Xgeva. I just recently had 3 month scans. The met looks good! Has shrunk in size and it states that my bone has shown signs of regenerating. No new mets! I will have an ultra sound on my breast on the 11th. I feel confident that has also shrank in size as I have a hard time finding it anymore. Also the cancer markers have all lowered a great deal. Doctor is very pleased with the treatment. I did have issues with white blood count the first round and so they lowered my dosage on the Kisqali, but it still seems to be affective. I will see the oncologist on the 17th and depending on the results of the ultrasound we will discuss surgery options.
The hardest part has been realizing that I may not live as long as I always imagined I would. I have two other grown children are both married with beautiful children. My son that passed away also has 2 sons. I am married to a wonderful man. I also have an adult stepdaughter who also has a daughter. 8 grandchildren total with 2 more on the way! So thinking about leaving all of them is very hard. Also to go from never going to the doctor for anything except for a check up now and then, I am now going in every week for labs. It is really odd walking into a clinic and everyone knows why you are there and you don't even have to check in!
I have a wonderful support system that just blows me away. I actually discovered how big of a support system I have, back in February when I lost my son. I have a large supportive family, I have a loving church family, and many other friends. I am excited to have found this forum as I feel like a newbie with so much to learn. Also anxious to share this new drug treatment and to maybe find others that are receiving the same treatment.
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Hello All! I am a 35 year old mother of a beautiful 2 year old baby girl. When I was six months pregnant, I felt a hard lump in my right breast. Of course, I figured it was my breast acting funny with milk ducts due to pregnancy but it still worried me a little. My OBG ordered an ultrasound which revealed a cyst that “did not look like the bad kind”. I noticed during pregnancy it grew harder and bigger and fast! A couple weeks after giving birth I had a biopsy done which confirmed TNBC. My daughter was exactly 4 weeks old when I found out. I started chemo in December of 2015. Four rounds of cisplatin, fours rounds of AC, 7 rounds of Taxol before more scans revealed the tumor was growing and not responding. Radical mastectomy of right breast and a skin graft on right thigh was done on 6/24/16. What a recovery that was! Two wound vacuums and 20+ metal staples in chest. Senitnel lymph node and 14 others removed. All modes and margins were negative for cancer. I just knew I had won’t the fight!! Radiation began and I completed 30 rounds by September of 2016.
I celebrated my daughters first birthday and I had beat cancer! What a wonderful celebration. This nightmare was behind me and only great things to come.
December 2017...weird spasm in my right leg that left my foot numb. Hmm...must be overdoing it. My routine checkup with my oncologist is coming so I should mention this. MRI on brain confirmed one large tumor on left frontal lobe...8 more small tumors spread throughout. Christmas was a blur. I tried to be happy for my daughter and family over the holidays but I am so scared. On 1/5/18 i had brain surgery to remove the one large tumor. I made it through and am home recovering now. Let me tell you, it is so weird healing from brain surgery!! Things get heavy feeling and I a lot of weird sensations. The steroids I am on make me an emotional rollercoaster! I eat ALL the time, no joke I am eating 24/7. My face and belly are swollen like a moon pie! It’s all from the steroids ladies so if you are going through this please know, you can do it too!! I am going this week to get radiation started for the other small brain tumors. Radiosurgery I think is what they call it where they will make me a special helmet to pin point the tumors for high dosage radiation. I also will have a bone and CT scan to see if there are other places in my body with more lesions. I am praying there are not more on other organs but I know it is likely. I am looking for hope that even if there are other places on other organs, that I still have options. I know this is not curable, but I can be treated. I can live with metastatic TNBC. I want to see my little girl grow up to be three, four, sixteen!!
I am happy to chat, give encouragement, lend an ear. I would like some reassurance and hope that I can do this, that I will still have some years ahead. That there are women just like me still going strong!
Love and Peace!
Rachel
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Hi Rachel-
Thank you so much for sharing your story with us! We're so very sorry you're going through this, at such a young age and with a new baby. We know how difficult it is, and we're all here with you and for you!
The Mods
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Hi everyone. My name is Barb and I live in Nebraska. My story began back in the summer of 2015. I started experiencing pain in my rib cage and went to an emergicare center one weekend due to the pain. They did a chest xray AND a CT scan. I was told I had pleurisy, given a script for pain and sent home. The pain got better for a while but later that fall, it was back and my lower back was also hurting. I went to my GP doctor, who said I needed physical therapy and was put on Neurontin. Did PT with no noticeable improvement.... In December 2015, I went in for my yearly mammogram. Thought everything was fine till the sweet little nurse ran half way across the parking lot as I was leaving, asking me if I could come back inside. The radiologist was still there and wanted to look at something a little closer. Well, by the end of December I was 99% sure I had breast cancer. Surgery was set for January 2016 and after a lumpectomy and removal of 6 lymph nodes, I was told I had stage 4 metastatic breast cancer. MRI's and CT scans showed bone mets on my back, rib cage, sternum and at the base of my skull. I also have spots on my liver. Port for chemo was installed in February and I started chemo in March 2016. We started with abraxane, then after about 10 months we switched to Adriamycin. In July of 2017, we switched to taxotere. So far, we've been able to shrink a few spots on the liver and nothing else appears to be growing. The word "stable" is a good thing. The worse rough spot has been developing osteonecrosis in my jaw last fall. I am divorced and live by myself. I have a fantastic sister and her family who are with me every step of the way. I still work full time but am thinking about retiring sometime this year. I am 62. Things I would tell anyone just starting out on this journey.... DON'T surf the internet!!! Listen to your doctors. Don't focus so hard on numbers and "average life expectancy". Don't compare yourself to others. Everyone is not the same. We may all be traveling on the Cancer highway, but the route we take and what we will see and experience along the way will be different. Live and love each day you have to the fullest. Some days won't be as easy as others and it's perfectly OK to have those days were you just want to curl up in bed and cry. Live, love, laugh and travel if you can. Do it NOW. One of my biggest pet peeves is when someone asks about my diagnosis and the future and they come back with the typical " well, we could get hit by a bus tomorrow" I have learned to bite my tongue and mumble "bless your heart". Sometimes I'll tell them... "This is true but you are standing on the sidewalk. I'm standing in the middle of a four lane, undivided highway with no traffic signals...." Stay positive and don't lose your sense of humor!!! For me, it makes a big difference on those tough days!!
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PettyR22, I only see one post from you at this writing, and I am concerned that you are not getting the support you had hoped for yet. So here is something important to know. This thread was created by the moderators to ask for stories that might help create helpful content on the BCO web site. So this particular thread is mostly a collection of stories. The bulk of discussion and support is to be found on other threads, and I think there are many stage iv women who do not regularly read this thread. So I hope you have not given up, and will soon introduce yourself in other stage iv threads here. You will be welcomed. I will post some links for you.
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Petty R22, you will find your support community. Here are some good places to start:
Ladies in their 30s?
https://community.breastcancer.org/forum/8/topics/...
Triple Negative Stage IV
https://community.breastcancer.org/forum/8/topics/...
Brain Mets Sisters
https://community.breastcancer.org/forum/8/topics/...
Life does not end with a stage IV diagnosis
https://community.breastcancer.org/forum/8/topics/...
Tips for fighting the dark clouds
https://community.breastcancer.org/forum/8/topics/...
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Good Morning,
I am writing this for my 72-year old mother, who tragically died on Tuesday 01/17/2018. She was a long time viewer of these forums, and recently started posting. I hope that this story and the tips below it will help some of you. Even if it benefits one person, it will be worth it. She made this account, and now I am using it to spread her story and help whoever I can, in her name.
She had a single breast tumor for approximately 20 years. She didn't seek treatment, as it didn't grow or change shape. Finally in 2014, it began to grow, so she sought treatment and was diagnosed with Stage II breast cancer. She started taking Faslodex and watched her markers go down, as well as the tumor size decrease. She modified her diet and tried a more vegan approach, as well as also tried CKD (Cyclical Ketosis Diet). She always exercised, did yoga, and was very spiritual. She started to intermittently discontinue the Faslodex due to joint issues that the drug was causing. The doctors said it would be OK to cycle the drug off and just keep an eye on the markers.
In January of 2017, she began to complain of stomach pain in the appendix region. After 2-3 days of increasingly worse pain, I took her to the emergency room. 5 days later, they did laproscopic surgery on her to discover that her appendix was obliterated and had sprayed mucus all over her peritoneum. The surgeon cleaned it out and send the mucus to pathology, where it was determined to not contain cancer cells (according to the test). The doctor did not advise of any abnormalities within the peritoneum and suspected acute appendicitis. She was prescribed several antibiotics for 10-14 days, to which she completed without incident. She also was taken off Faslodex completely for approximately 1-2 months during the appendix issues. After all this transpired, the tumor rapidly began to grow and change shape, coming close to breaching the skin.
In early 2017, she consulted a surgeon regarding these complications. The surgeon advised that it would be best to remove the tumor and get chemo/radiation immediately afterwards to prevent the spread of the disease. My mother, always skeptical of the traditional allopathic method for treating cancer, agreed to the surgery, but refused the chemo/radiation. The surgeon first advised that they had clean margins and that the tumor was gone with no indication of it spreading. The doctor later advised her that a small piece of the tumor apparently got stuck on the muscle, snapped back, and thus, the margins weren't clear after all. Approximately 4 months later, in August, she discovered the start of small tumoring on the skin where the previous tumor was removed. Worried that the cancer was back, she contacted the oncologist who now diagnosed her with Stage IV cancer, very slightly HER2+, and recommended Taxol/Herceptin/Perjeta. She reluctantly decided to get the chemo, which she did. She was prescribed Omeprazole and OTC antacids to take with the chemo, as well as Benadryl. In addition, during the chemo, she was administered cold caps and had cold packs on her hands and feet to prevent neuropathy. The cold caps worked beautifully, no hair loss whatsoever, and the ice packs prevented peripheral neuropathy. It should be noted that sometime during late 2016 (when her appendix was obliterated) throughout 2017, she developed ascites of the abdomen, which progressively got worse.
6 rounds of taxol later, she started to feel better and the tumoring was disappearing. After the taxol was complete, she was to continue herceptin and perjeta for approximately one year. Approximately 2-3 weeks after the last round of taxol, she went on a vacation to celebrate her feeling better. She stayed at a beach hotel with her friend and contracted flu like symptoms on her way back. She suspected foreign travelers had been sick at the hotel, and thought it was just a flu. The flu manifested itself into suspected pneumonia, with one of her lungs completed filled with fluid. She got a chest xray and they found that her pleural lining was filled with fluid and that the one lung wasn't functioning. She got a thoracentesis and immediately felt better, with the 1.25 liters of fluid being sent out to pathology. The pathology came back positive for cancer in the pleural fluid of one lung. She then asked the doctor if she had to continue the Omeprazole, to which the doctor said she could discontinue it and use antacids as necessary. She discontinued the Omeprazole and Zofran and within a week began developing harsh gastritis symptoms (stomach gurgling, reflux, nausea, bloating, etc.) She also noticed the ascites of the abdomen getting a little worse and making her look about 4-5 months pregnant. She contacted the doctor, who always takes forever to reply (usually at least a week from the time of the call to get an appointment). The doctor recommended she restart Omeprazole, to which she did, with no improvement. The doctor said that the herceptin and perjeta should help with the tumoring and that the markers didn't appear to be further elevated. The doctor offered no insight regarding the ascites.
In November, her symptoms became dramatically worse. Her gastro symptoms became exacerbated, with discomfort, nausea, early satiety, gurgling/reflux, etc. appearing constantly. She began sleeping worse and worse, having diarrhea, and occasional vomiting. By Christmas Day, 2017, she was hospitalized for extensive gastroparesis. Literally a sip of water would cause her to vomit. The hospital gave her IV Zofran and Famotidine, which seemed to help. She ate on Christmas night without any vomiting. The next day, the vomiting returned and she was hospitalized on December 27th. Numerous doctors couldn't figure out what was wrong with her and guessed that it was acid from the chemo. Again, antacids were prescribed with zofran, but nothing for the inability to physically eat and hold food down. From December 27th through January 2nd, she was unable to eat anything. Her oncologist offered no insight and was nowhere to be found for 2 weeks straight. Her P.A. and other doctors said "go to the hospital." She received a paracentesis and thoracentesis, removing 1.65 liters of ascites from her abdomen and 1.25 liters from her pleura. Both were sent to pathology and the abdominal ascites came back positive for cancer.
Ultimately, I found a boutique oncologist (ie: Cash only), that caters to their patients and offers every type of therapy imaginable. This particular doctor is highly skilled and world renowned for extreme cases. He took her immediately, looked over her case, and requested that she go to a surgeon to have a drain tube put her in stomach, pleura, and abdomen to temporarily alleviate the issues. The drain tube in her stomach drained the contents of the stomach and relieved much of the pain and pressure she felt from food sitting there and not digesting. The pleural drain removed the fluid from behind her lung and improved her breathing somewhat. The peritoneal drain made it easier to drain the ascites as necessary to relieve pressure. While the surgeon was there, he biopsied her lymph nodes and laproscopically looked inside of her peritoneum. He immediately observed thorough tumoring throughout her abdomen, with tumoring on one of her lungs as well. He observed a Sister Mary Joseph nodule and took a biopsy therein. The surgeon advised me that she had a very advanced case of peritoneal carcinomatosis, and that she had 1-3 months to live. The samples of her pleural fluid and ascites were sent to Weisenthal Cancer in California, where they were analyzed against all known chemo drugs to find the correct combo to fight her cancer. The tests, which cost $8,800 for each sample, were extremely thorough and take about a week to process.
My mother, always the optimistic fighter that lived an extremely healthy and spiritual lifestyle, did not give up. After her hospital stay, where she was ultimately prescribed reglan for her gastroparesis, she met with the new oncologist again. He advised that only a few very extreme therapies existed to deal with her complicated diagnosis, including HIPEC (Hyperthermic intraperitoneal chemotherapy), cytoreductive surgery, and/or Whole Body Hyperthermia + Chemo + Radiation. The oncologist said that the prognosis of 1-3 months was wrong and that instead she had a chance at several years or full remission depending on how she responded to the new treatments. After that day, she became extremely malnourished from not being able to hold food down, so the oncologist ordered a port be installed to give her TPN (total parental nutrition). She got the port installed and began TPN. The TPN immediately gave her horrible diarrhea and she became dehydrated and hypokalemic (low potassium). Back to the hospital again, this time on 01/11/2018. The report from Weisenthal came back and it was found that taxol had very little effectiveness against the disease, however, it was found that high dose Tamoxifen + Doxorubicin + Vinorelbine had an extremely high toxicity towards the cancer. The oncologist ordered the drugs and was going to begin low-dose chemo the moment she got out of the hospital. The treatment would include low-dose chemo for 8-12 weeks to reduce the cancer, then ultimately HIPEC/Cytoreductive surgery/Radiation and/or whole body hyperthermia, followed up by zejula or other maintenance drugs afterwards. He then removed the chest tube, as it was causing bronchial spasms and removing very little fluid. After the tube was out, she felt better.
In the hospital, the nephrologist ordered that she receive complete TPN (reworked for her) and plenty of IV potassium. Her potassium levels began to increase well and her co2 levels began to drop (both good for her). By 01/16/2018, her potassium levels were back to normal. The TPN started to work and arrested the atrophy and made her feel a little better. The whole time she was alert and ambulatory, as she would walk around the hospital without issue. She was recommended by the gastroenterologist to get an endoscopy to find out more regarding the gastroparesis. On 01/16/2018, her potassium and co2 levels had normalized and she was due to be discharged on 01/17/2018 to begin the new chemo. She had the endoscopy first thing in the morning, around 07:30AM. The GI doctor did a biopsy of her esophagus, but did not see any tumoring. Instead, he saw some Candida and prescribed her two antifungal liquid medications. After the procedure, she developed an esophageal bleed, which seemed to get worse throughout the day. She was vomiting blood and had blood coming out of the stomach tube, both at the site and into the collection bag. The nurses contacted the GI doctor, several times, to which he said that it was normal and to just "watch it." Again the charge nurse called a few hours later asking for surgical intervention to which the doctor refused and said that the bleeding was normal. As the day went on, she became agitated, fearful, panicked, and said she felt like she was dying. Her blood pressure gradually dropped as her heartrate increased. By 1AM, her blood pressure was 50/30 and the nurses scrambled to get her a transfusion. By 3AM, she got a 300ml transfusion and started to feel better. She continued to vomit black substance, likely dry blood, and her breathing progressively got more rapid and shallow. She started spitting out foamy substance and the nurses said this was normal for low blood volume and low red count. By 6AM the transfusion was complete and she thought she was a bit better. By 7AM, she could only take "sips" of air, rapidly breathing and panicked. I ran and got the nurses, who sounded the alarm. She coded about 20 seconds later. They worked for her 15 minutes to no avail. The doctor said, "her lungs were filled with blood, there was nothing we could do."
The irony is that despite having aggressive stage IV cancer with a poor prognosis, my mother died from complications sustained from 5 minute routine outpatient endoscopy. A horrifying end to her saga, and some serious PTSD for me.
That being said, I wanted to share some tips/advice to anyone else going through Cancer treatment, from what I've learned, and hopefully her death will not be in vain.
1. When you get your first diagnosis, go straight to the top if you can, ie: MD Anderson, Moffit, Sloan Kettering, etc. Try not to dabble with local doctors and as long as you can afford it and/or if your insurance is good for it, get the absolute best from the start. This will eliminate a LOT of headaches and heartache later.
2. When the doctor recommends specific treatment(s), do your research first, lots of it. When you feel that you agree, go forward with it, but it always helps to get a second or third opinion in person.
3. As soon as possible, use Weisenthal Cancer and get your samples out to them. They provide an overnight shipping label and specimen container with reagent. Make sure to follow the directions and get it to them ASAP. Within a week you will have your results. I cannot stress this step enough, as it will save you a LOT of grief in getting potentially the wrong chemo drugs that can do more harm than good.
4. Look into low-dose chemo treatments as options for more aggressive cancers.
5. Cold Caps work for saving hair! You will need an entourage to administer them properly, or a facility that has them in house, but its worth every penny.
6. Ice packs on hands/feet during chemo helps eliminate much neuropathy later, so use them!
7. Fatten yourself up as much as possible prior to chemo. In the unfortunate event that you have gastro symptoms, you will have plenty of excess body mass to burn, giving you additional time before becoming severely malnourished.
8. Get the cancer treatment and get the disease under control first before any exploratory and/or elective procedures.
9. When getting procedures done, make sure the doctor knows your diagnosis and/or any complications your disease may have. Remember, you can always say no. Look online and see if you can research the procedure for someone with a similar diagnosis and make sure you know what you're getting into.
10. Use your support ground and have as many people help you as possible to do research, be with you, talk to you, and give you their positive energy.
11. If you know you have something going on, ie: a tumor, DO NOT WAIT. Get the tests, get the diagnosis, and refer back to step #1.
I wish you all, and your families, the best of luck. I wish that all of you beat this disease and are able to share your stories later with others. My mother would have wanted all of you to survive and live well, and I know that she would have willingly sacrificed herself if she knew it would help someone else. I hope that her experiences can help some of you, or even just one person.
Love and best wishes to all of you.
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Rachel, I am sorry to have to read your story, but know you will find support here. Spend some time and find a thread that matches your diagnosis like those suggested by shetlandPony. There you will find more help and make some great cyber friends. Take care.
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Wondering if posters on this thread are aware of up and coming proposed changes to BCO site. Here's a link if you want to inform yourself.
Are You Aware of/Concerned about proposed BCO thread changes?
GP
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This is SO encouraging!!! I am not HER2- but am ER+/PR+ and was treated for stage 3B in 2013/14 with ACT chemo/surgery/radiation. To my shock, in December it came back again and is now Stage 4 spread thoughout my lymph nodes in neck, chest and around lungs but not in the lungs. They said 3-5 so this gives me SO much hope. I've started Ibrance and Faslodex. I've noticed though that my right thumb and finger are numb now though. Has anyone had neurothapy with these drugs? (I didn't with ACT chemo since I used L-Glutamine 2x a day mixed in water which seemed to help.) Any advice appreciated since I''m still in shock over it all. (I've always eaten well, exercised, no family history but I've learned that this is not unusual at all to happen regardless.)
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kellyga, is it possible the numbness is caused by the cancer and not the drugs? I have a tumour (probably a sleeper mode since first dx in 2013) that is entangled with the neurovascular bundle of the brachial plexus and I have nerve damage though it affects my right three fingers but whole hand thus is pretty useless. Hoping you can find out what your neuropathy is caused by.
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In 2003, I was a busy 42 year old wife and Mom of 3. Although I had been to the doctor numerous times expressing concern over a growing mass in my breast, the mass did not show up on a mammogram or sonogram. The tumor continued to grow and eventually I was diagnosed with ER/PR positive, stage IIIC, invasive lobular breast cancer. My prognosis was poor. I received neoadjuvant chemotherapy to shrink the mass. Next, I had a double mastectomy. Pathology testing revealed there was a a great deal of residual cancer. Therefore, my oncologist recommended additional chemo followed by radiation. After the additional treatment, I had my ovaries removed and began therapy with Aromasin.
From 2005 to 2015, I remained on Aromasin and was cancer free. In early 2016, a routine oncology appointment showed that my CA 27.29 was elevated to 245. A PET scan revealed several enlarged retroperitoneal lymph nodes. There was some conflicting data regarding the ER status of my cancer, so I began taking Ibrance with the hope I was still ER positive. Soon additional testing confirmed that this stage 4 lobular cancer was triple negative and very aggressive. Within 3 months of my stage 4 recurrence, I was suffering from the symptoms of a bowel obstruction. I did my best to manage the symptoms while GI tests were performed. I was finding it increasingly difficult to eat without debilitating pain. By October of 2016, I weighed just over 100 pounds and my tumor marker soared to over 1300. Things looked terribly bleak.
In retrospect, I see that that God was using the bowel obstruction to bring me to a place of healing. You see, my UCSD GI surgeon, Dr. Jason Sicklick, serves as the principle investigator of a clinical trial designed to test a new approach to treating cancer. The objective of this trial is to determine if patient outcome is better with "individualized therapy" or "standard of care" therapy. The trial uses genomic data from each individual patient's tumor to create an individualized treatment plan. When I was accepted into this clinical trial, I had failed 6 lines of therapy and been referred for hospice care. Were it not for the I-Predict clinical trial, that created a custom treatment plan based on the genomic profile of my individual cancer, I would most likely have continued to fail the standard breast cancer treatment options available to me.
From the Foundation One genomic report, the clinical trial team noted a very high Tumor Mutation Burden (TMB) as well as a high PD-1 pathway in my tumor sample. After a careful review of my case, they selected the drug, Opdivo, for my treatment. Unfortunately, Opdivo was denied by my insurance provider because immunotherapy is not standard of care for breast cancer. Thankfully, the clinical trial team coordinated with the Bristol-Meyers Squibb Patient Assistance Foundation (BMSPAF) to obtain the drug for free on my behalf. I cannot imagine any other therapy being more effective.
My response to Opdivo was immediate and dramatic. After just two infusions, my tumor markers dropped by 75% to 84%. By mid-June of 2017, all of my tumor markers were in the normal range. My first CT scan after 8 weeks in the trial suggested a potential complete response to therapy. A PET scan on 6/16/17 revealed that previously seen metabolically active retroperitoneal and midline pelvic lymph nodes no longer present. On 1/9/18 ileostomy take down surgery was performed and there was no evidence of disease.
While I have no way of knowing how my cancer will behave in the future, I feel incredibly blessed to be alive today. Sometimes I wake up long before daylight with the same excitement and joy a child feels on Christmas morning. Like the little child, I force myself to remain in bed until the first light of day. Then I jump out of bed confident that this new day will overflow with gifts - Including the priceless gift of more time with my husband and three children.
I daily pray that God will illuminate the mystery of this disease. I think there are significant advances being made. We are "fearfully and wonderfully made"! Each person is unique and as our cancers are treated with that in mind, we will see people with stage 4 cancer living much, much longer. Thank you for reading my story. I pray God surround you with the love of those you hold dear and give you strength, hope, and perseverance as you seek healing.
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Healing Hope,
God bless you. Thank you so much for sharing your story here. You brought tears to my eyes, particularly your description of greeting each sunrise with the eyes of a happy child. May you always be filled with the light.
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Healing Hope, thank you for sharing your story. You persevered under extremely challenging circumstances (to put it mildly). I do hope that individualized cancer therapy becomes more the norm and others have the same optimistic outcome that you have had. All the best and I wish you many more blessings. Thank you.
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Hi all,
I am writing my mom's story, who is sitting beside me now recovering from 2nd cycle of Chemo. She is 53 yrs old - who has diabetic & blood pressure. She found lump in her right auxiliary tail during OCT 2017. An ultrasound reveals that it is just a cyst and doctor told us to not to worry. Since we had a family history of breast cancer, thought of getting mammography done & we did that on 25 Dec 2017 followed by FNAC. Our life has shaken after seeing that report - 2 irregular mass 4cm each, Infiltrating duct carcinoma.
The very next day we were routed to Oncologist, he suggested for PET/CT & Biopsy. Doctor has planned for 3 cycles of Chemo first to shrunk the tumor. Now my mom has completed 2 cycles.
Am very much worried about my mom, initially she was not talking to anyone personally/ over phone, she just prefer to be alone. So only I joined this forum, started to read all the stories in front of her daily, she is somehow feeling ok now a days. We are 4 in a family- mom, dad, me & my younger bro. I got married 4 years back and my mom wants to see her son to get married soon. Everyday am praying god to give strength to my mom.
Even I have taken second opinion with other oncologist too, they told that the survival rate is only 4-5 yrs since it has spread to lungs. Any advice appreciated bec I am still numb. I need my mom
.Bhavana
Dx: 27/12/2017[PET/CT scan & Biopsy], Right auxiliary tail, 4cm, Grade 2, Stage IV [some nodules are noted in lungs], ER-/PR-, Her2 -1st Chemotherapy: 11/01/2018 - Alrubicin, Endoxan, 5 Fu
2nd Chemotherapy: 01/02/2018 - same
3rd Chemotherapy: Scheduled on 22/02/2018
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Dear BHavana_7
You sound like a WONDERFUL daughter! No doubt you are a great comfort to your Mom right now. A cancer diagnosis makes one's world come to a screeching halt. There is a period of grief. Some will withdraw from friends and family while others will embrace the support of friends and family. Each one will cope in their own way. I would like to share a few insights I have gained. I am sure other ladies have wisdom, too and perhaps together we can help you to help your Mom. I am going to list these ideas as if I were speaking directly to your Mom:
1. It is very critical to guard your mind. When you begin to think a "what if" question or other thought that you know will lead you down a dark road, it is imperative that you stop mid sentence and replace that thought with a hope-filled thought. Fill your mind with something good.
2. Read stories and books about healing or about people who overcome incredible adversities. Watch light-hearted TV shows with happy endings. Humor is good because it releases endorphins.
3. Surround yourself with supportive people. If there is someone in your life with whom you have a very draining relationship, establish boundaries and then limit time with them. This can be hard if it involves family, but remember, it is not forever, just for a season.
4. Make it a habit NOT to read anything related to cancer after about 4 pm. You do not want to go to bed with a piece of discouraging research information haunting you when you are trying to sleep.
5. Before bed I read magazines or devotionals that have nothing to do with cancer. I visualize happy times: pleasant childhood memories, fun vacations, or other "happy thoughts". When first diagnosed, I took Advil PM for a few weeks. Now I sometimes take a melatonin dissolvable tablet.
6. Plan a weekend getaway. Savor time with those you hold most dear and have them join you. Make memories. Enjoy a change of scenery. If you live on the coast, go inland and visa versa. You need not travel far to get away.
For many years, I have been meeting with a small group of ladies for one hour of prayer every Thursday morning. We are praying so many and would like to pray for your Mom! Prayer has really helped to give me hope. On many occasions when I have had setbacks and felt great uncertainty about the future, God has flooded my heart with His presence. I guess I would describe it as the "peace that passes all understanding". It is not something I "muster", it is just God's grace.
"Be joyful in hope, patient in affliction, and faithful in prayer" Romans 12:12
Warmest wishes for hope and healing,
Teresa
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Dear Teresa,
Many thanks to you.
Bhavana
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Hi all,
Mom has completed 3 cycles of Chemo(22/02/2018) & the 2nd PET/CT report says(13/03/2018)- Interval increase in the size of lesion in the right axillary tail & lymph nodes, also increase in the size, number & metabolic activity of lung lesions.
Right breast auxiliary tail: Tumor size increased from 32x42x36mm(SUV 20.9) to 44x61x49mm(SUV 20.4)
Left Lower lobe-Lung: Tumor size increased from 10x8mm(SUV 2.1) to 22x24mm(SUV 15.3)
As this chemo medicine did not work well, doctor suggested us to get another biopsy done- to check which chemo medicine will act better on the tumor. Since the lab will take 10 days to get this report meanwhile doctor suggested to take chemo weekly with different medicine (Paclitaxel/Petaxel-N) for 3 months followed by 3rd PET/CT scan.
3 months of Chemotherapy has not changed or reduced the growth of the tumor. Now we are back to square one. Start of another cycle of Chemo. This time weekly for 12 more times. We can pray god that this time the medicine given works.
It also mentioned that increase in necrotic component is seen. Doctor said some tumor cells are dead too which is a good sign, but unfortunately the one in lungs has increased several folds.
Please advise how do we make sure the medicine used for chemo this time is the right one.
Thanks,
Bhavana
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I hope you’re doing well. I just seen your post and I can relate to your pains. I am 31 and just got diagnosed. I am also single and have no children. I feel as though my dreams of having a family has been shattered. They diagnosed me with stage 4 IDC right off the bat. With all these hormones they got me on and chemo I’m wondering if I will ever be able to carry a child ...not to mention I am estrogen +. Doctor said I’m getting pregnant is risky. How does this Happen to someone so young ! I hate This. I hope you’re doing welll. Sending you hugs
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Hello everyone. First I want to say thank you for sharing your stories! I wish none of us had to go through this horrible journey but sharing your stories has given me hope that we may just beat this.
My name is Rebecca Ashlock everyone calls me Becca. I'm 47 years old soon to be 48 May 10th. Ive been married to a wonderful and supportive Man for 25 years this Dec his name is Dwayne. we have 3 sons in their early 20s. I have 1 grand daughter. I just recently lost my job of 15yrs this Feb. it was a hard loss but the company treated me with respect.
My cancer journey began May 2014. We had decided to sell our home and move to the country. So we had been moving furniture into storage etc My right arm started hurting I thought I had pulled a muscle. Then after two weeks I noticed a knot in the arm pit area. I went to the doctor and he did an x ray and referred me to do a Mammogram. I did the Mammogram two days later on a Fri. Monday they called and asked me to come in for a MRI. I did that on Tues. I received a call Thurs to come in for a biopsy on Mon. After my biopsy of the right breast and Lymph nodes I got a call that I was positive for BC. My mom and father in law had both had cancer so I made an Appt with Dr Robert Reynolds our oncologist. I had gotten to know him and his staff during my moms battle with lung cancer and my father in laws Leukemia. My tumor was already large 2cm by 6cm he referred me to a surgeon Dr Boggs but they both agreed we needed to shrink the tumor and make sure the cancer was not spreading through the Lymph nodes before surgery. My diagnosis was Stage III breast cancer. Er-Neg Pr- Pos her2-Neg I had 4.5 months of ACT (adrymiacin/cytoxin/taxol) dose dense chemo. Then opted for a complete mastectomy with 15 Lymph node removal. After surgery Nov 24th 2014 I went in for my scan Dec 22 2014. On Dec 29th I was declared cancer free. I was so happy! It was a great way to start 2015! I began Tamoxifen and my regular scheduled scans. I also opted to do the gene testing especially since I had a grand daughter to be concerned with. They all came back negative. So I figured we were in the clear and this battle was won!
I did my PET scan Nov 2016 and everything was normal. In Feb of 2017 I felt ill like I had a sinus infection and kept getting light head aches. So I went in to see my family doctor. He did an X-ray and said I think you need to go see your oncologist. I already had an appt for the following Monday March 6th. I knew something was wrong I just wasn't sure what yet. My oncologist scheduled a full body MRI & brain scan I did that Wed Mar 8th then on Fri Mar 10th I got called for a biopsy. We scheduled a biopsy for Mon Mar 13th. They did a biopsy of the Lymph nodes and lung. Wed Mar 15th I was told my cancer was back in both lungs, right and left Aux Lymph nodes and I had two spots on my brain. I was diagnosed with Stage 4 Metastic BC Er-Neg Pr-Pos Her2-Neg We scheduled my port placement because I had my previous one removed during reconstruction. I started Abraxane chemotherapy every other week on April 6th 2017. I did the Abraxane for 3.5 months and then stopped to do whole brain radiation because the chemo was not working for the brain mets. I did whole Brain for two weeks. It has worked so far. No brain mets! That was somewhat a relief. My lungs have been giving us a hard time! The cancer started to grow in both lungs so we switched to Navolbine chemo two weeks on 1 week off. I am not a fan of this chemo it caused neuropathy in my hands and feet. But you do what you have too! I just finished a new scan the end of Feb 2018 and the Navolbine is no longer working and I'm back on Liposomal Doxorubicin(Adrymiacin with lipids) I can only do this every 21 days so that's a plus. I actually hate this chemo it knocks my energy in the dirt and causes some strong Nausea but if it works to keep me alive I'm ok with it! So that's where I am today.
Being on chemo for almost a year now, April 6th 2018 will be a full year has been hard to deal with. I have good and bad days. Mostly good because I refuse to let this cancer take over my entire life! I have days where I wonder when will this end my life? Will I see my sons marry? Will I get to enjoy another grand child? I take it one day at a time. This year my goal is to make it to Dec 9th which is my 25th wedding anniversary. Then I will reach for another goal.
I have a wonderful support system of family, friends, my health providers and church. I think a lot of how you get through this is how you handle it. You have to stay positive and focused or the what ifs will tear you down. Each person is different and no cancer journey is the same because our bodies are unique. I try to stay away from internet searches and focus on people like this community who go through it for advice and support. Don't get me wrong I have my really bad days usually when the chemo has zapped all my energy, I can't even smell food and I feel I can barely get out of bed. Those days I just rest and nap a lot and know they only last 2-3 days per chemo cycle. They can stink and even with insurance the financial burden can be tough but you do what you can. I focus on my treatment and everything else is prioritized by importance.
I wish I could find a cure all for this stupid disease! Or at least figure out why we get it and stop it. Until they do find a cure I will continue to fight and push forward hoping to enjoy all those precious moments in life we look forward to! If I can lend an ear, or help in any way I'm here. Good luck to all us warriors! My prayers and hugs!
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Hello all!
My mom was diagnosed with Stage IV Triple Negative Breast Cancer in October 2017. Here is her journey so far...
She was diagnosed with Stage 2A breast cancer in September 2017. She was to have 8 rounds of chemo and then surgery. The day before going in for chemo, they did a scan to measure the size of the breast tumor. During that scan, they noticed a spot on her liver so they cancelled chemo for the next day to discuss the treatment.
One week after learning of the spot on her liver, they did a biopsy of it and confirmed it was cancerous so she was now Stage 2B Breast Cancer. That same week, they did a complete body scan to make sure it hadn't spread anywhere else. They confirmed it hadn't and was just in her breast and liver. They scheduled chemo to target both the breast and liver for the following week.
That following week, they did another scan the day before she was to start chemo, to get the exact size of the tumor and spot so they could compare after the 8 rounds of chemo to make sure they had shrunk. That was a Thursday and she was to start chemo the next day, Friday.
Friday, they called her and said to come up a few hours early for another scan as they think she has spots on her lungs. Keep in mind, the week before, they did the body scan and said she was clear besides her liver and breast. They did the scan around 11 on that Friday and was to start chemo at 1. The dr brought my mom and dad into his office around noon and said 'Patti, everything has changed. You're lungs are filled with cancer and you are now Stage 4. There's nothing we can do for you and you have less than a year to live. We can try the chemo but it's not going to do anything." The doctor got up, shook my dad's hand, and said "I'm sorry, Rich." and walked out of the room.
Within two minutes, two clinical researchers walked into my mom's room, where she was just told she was going to die in less than a year, and wanted her to sign off on them using her body for research and whatnot. Legit, two minutes after getting a death sentence, they wanted her to read these papers and repeat them to the researchers and sign off on her body. Can you imagine that….like are you f'ing kidding me!?!?!?!?!?!?
My sister and I called UW Carbone Cancer Center in Madison, WI and got her in for a second opinion. I happen to know a doctor there so they were able to expedite her appointment. My whole family went to her initial appointment for the second opinion and this was with Dr. Burkard. HE IS INCREDIBLE!!!! He sat down with us for an hour and half and went over everything about breast cancer and how it works, the different types of treatments, the side effects, the successes and fails, everything!
He seemed to be focusing on the treatment of the breast tumor and the liver but didn't really mention the lungs. We were kind of confused so we asked about her lungs and how he was going to treat that. He began to say that he wasn't concerned about her lungs and wasn't quite sure what the clinic that initially diagnosed her was seeing. He pulled up her scans from the clinic that initially diagnosed my mother and showed us her the two small spots on her lungs, that he couldn't be 100% sure were cancerous, and wondered why they told her that her lungs were filled with it. He said that humans are born with spots on their lungs so that's what this could be or it could be scar tissue which humans tend to have. He said he'd never say it spread to her lungs without extensive and invasive testing. He said though, that since it spread to her liver, the spots on her lungs are most likely cancerous but the absolute least of his concerns with her cancer.
She went on to have four rounds of chemo, I can't remember what they were but I will find out. Chemo did what it was supposed to do and 'cleared the lungs, shrunk the spot on the liver, and shrunk the tumor in the breast.'
Since she was doing so well, she participated in a clinical trial where she was taking two forms of chemo in pills; ribociclib and bicalutamid. She was on those for one month, which she started at the end of January 2018. She had a scan just this last week and the trial pills didn't work at all. The spots on her lungs and liver have grown as well as the breast tumor and has spread to her other breast.
Her main onc was out of the country last week when her results came back but she saw another one in the department. The plan is to go back for more chemo but wanted to make sure she saw her main onc which she sees in 2 days to make sure he agrees with that plan.
It's been one hell of a roller coaster ride but no one is giving up. UGH! I can't even explain what the last 6 months have been like but I'm sure you all have an idea.
Peace, love, strength, healing, and happiness to those fighting cancer and to their family members, their loved ones, their caregivers, and their support groups!
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chronquist22, thank you for sharing. If you are interested in writing a story about your experience as a caregiver, and having us post it here (http://www.breastcancer.org/community/acknowledging/caregivers), that could be very helpful to others! If you do so, could you also provide a photo to accompany your experience. What is the most difficult part? What is helpful to you, to your mother? What words of advice could you offer to someone just going through it?
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terri, i am so sorry to hear of your situation, so i am going to give you some advice on my mother's situation. she has metastatic stage 4 HER2+ breast cancer and HER2nu which has spread to liver and bone. typical pattern for the disease. i have put her on a Ketogenic diet with fresh vegetable juice every morning consisting of carrots, celery, asparagus, broccoli, and apples. i have also made her take ISONTONIC vitamins with emphasis on their OPC-3, and she is also taking MUSCADINE grape seed extract that i purchased from NATURE'S PEARL online. it has helped with her energy level and she says she feels great, but we r about to start getting juiced, (chemo), next week, and we will see how she feels after that wonderful stuff fills her veins. pls look into this form of treatment to hopefully keep your cancer at bay so you may be able to watch your son grow old with you.
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jenny, that whole situation really sucks! you are so young and beautiful that there has got to be help. i have a customer in my neighborhood here in Tampa that had the same original triple negative breast cancer and they gave her 3 years max to live. she decided that was BS and was going to beat it. well, that was 6 years ago, and she is still here. what she did was change her diet to totally Vegan, started taking MUSCADINE grape seed extract form NATURE'S PEARL in high doses even during her chemo regimen along with supplements from the local Abbey's nutrition store. she told me her effects from the chemo were minimal compared to a friend of hers that had breast cancer and didn't go on her protocol. you may want to look into it. remember what you are dealing with. a cancer cell is a little bastard that has gone crazy in it's splitting of itself. instead of dying off and a new harmless cell being formed the thing goes nuts and multiplies rapidly using glucose as it's fuel source. i never knew that when you are told that when the MD's order a PET scan and they say the cancer will LIGHT UP LIKE A CHRISTMAS TREE what you are actually seeing is all the cells in your body with increased Glucose levels. you can't actually see a cancer cell because it's microscopic. my mother has stage 4 metastatic breast cancer and i put her on a regimen of vegetable juices in the am plus a ketogenic diet. i want her to go totally vegan, but it's a battle with her everyday just being on the regimen that i have her on. she is also taking the Muscadine grape seed extract and i also have her on the vitamins that i take called ISOTONIX. the health food nutritionist put her on 50,000 i/u's of vitamin D for 20 days, then dropping to 10,000 after that since she has active cancer.let me give you alittle advice. the best thing you can do is to educate yourself! we are all guinne pigs with cancer. sorry didn't spell that right. go on google and type in your situation. elevated tumor markers, or alternative cures for your breast cancer, or type anything! there is a whole world of info waiting at your fingertips. don't get discouraged, you can beat this monster. it isn't easy, but i think you can. use GOD'S medicine in addition to science's. on that note, they are getting ready to start juicing my mom. ( CHEMO) they are going to use a newer drug call TAXOL that is a derivative of DOCETAXOL. when i looked up where they got the drug from it actually came from the bark of a tree found in the pacific called the YEW tree. when i asked the oncologist if she knew the origin, she didn't. help your docs help you by learning to beat this. you can. pray, smile and stay positive. God didn't create junk! you are very special and have a beautiful family as well! my prayers are with you in CHRIST'S name! GOOD LUCK.
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Hi! 26 year old mom of 2 little girls (4years and 15 months) diagnosed stage IV in June 2017! I was RT side with lymph involement as well as Mets to the spine. So far I’ve done Chemo (A/C + T). RT mastectomy, tissue expander, radiation to chest wall, lymph nodes, and spine . letrozole and kisqali as management. Getting ready for reconstruction in a few days! This forum isn’t what I needed! Hard to remain positive with this diagnosis, but I’m feeling determined to overcome and enjoy a long life with my kiddo’s
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((((Megxlynn)))) we are sending you hugs. We too want you to overcome and enjoy a long life your kiddos!! We're all here for you, and will root for you!
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