Starting chemo July 2014
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Glad to hear you get to stop the armidex Puffin. Bet you're happy about that. I heard something from my oncologist too (I saw her in June and everything was fine - yay). Originally I was to be on tamoxifen for 5 years and then 5 years of letrozole for a total of 10. But I guess they are saying I only have to be on these two drugs for a total of 7 years. Well tamoxifen was a bust for me so no more of that. Have been on letrozole for 1 1/2 years (tamoxifen for 2 1/2 years) so instead of having to take letrozole for another 6 years I only have to do it for 3. YAY
Nancy
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Hi all - please keep PinkNinja in your prayers, as she will be returning to treatments for the tumors in her brain. My prayer is that this treatment does what it needs to so that she can walk without the assistance of a walker. Being walker dependent is very hard on her, as she is so active and outgoing.
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As for me - 3 anaphylactic reactions during chemo, first Taxol, which was OK, because there is a substitute, called Abraxane. Next Carboplatin, this was trickier, my onc consulted with Hopkins and Memorial Sloan Kettering, then with others at the cancer conference in June. It was decided that there is no substitute, but maybe a drug called Avastin could be used. Yep, that was my 3rd reaction. So now, I'm done with chemo, but didn't get all the drugs, which is scary, as this is such an aggressive cancer. Saw my surgeon for follow-up and I'm healed and there was no visually noticeable recurrence. Did post chemo CTs and everyone is happy with them. Now I will do internal radiation. Yep, they stick something 'up there' and zap you. That will probably start in a week and a half. I have my simulation on the 15th. After that, I will know if the RO wants to do 3 or 5 courses. Normally, they are every other day. They say most people don't have side effects, but I have heard, increase in urinary incontinence, possible fecal incontinence (OMG let's hope not), burning of the vaginal mucosa, (you have to use dilators to get it back to size afterwards) painful urination, constipation or diarrhea and fatigue. What a journey, but I can tell you, although this is a rare cancer, so the sample sizes in studies are sometimes only 12 people, so basically everyone is guessing, therefore terrifying, dealing with cancer a second time and doing chemo a second time is SO MUCH EASIER!!! The worst part is there is no wonderful group like you guys to support me! I hope all of you are doing well! Love, hugs and prayers to each and everyone of us July sisters.
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Keep us posted, we can still support you in our prayers.
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kmntwins,
Thank you so much for that update! I'm sorry that you had such bad reactions to those chemos; I hope radiation proves to be more tolerable. (No, I don't think ANYONE wants fecal incontinence, though there are Depends if it comes to that.) I'm glad to hear that your scans are good and that you've healed. I am praying always for the breast cancer patients on this board; I will certainly give a special shout out to God for both you and Pink Ninja. You guys have been through so much. Take care, and keep us updated!!!
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Keeping you kmntwins and pinkninja in my thoughts always. I have seen pinkninja's posts on FB. I hope these treatments will help her and I sure hope you kmntwins never see this beast again. You have been through so much and have handled it all like a champ. Hugs
Sadly my dog has been diagnosed with a strange cancer. Not common at all. He had a pleural effusion and they found carcinoma like cells in the fluid. They did a CT scan and found no mass. They are not even sure 100% this is cancer, but believe there is enough evidence to point to carcinomatosis (cancer cells found in fluid, but no mass). I swore I would never do chemo again with a dog. My first lab had cutaneous lymphoma and I hoped I'd never have another dog develop cancer. This is different though. My dog had a port (yes a port) put in as he is getting carboplatin every 3 weeks. It is only in the pleural cavity though. He is doing very well right now. Thank God for pet insurance. This dog was there for me when I went through chemo and helped me get through it. He is only 7 years old. I hate this damn disease so much. It ruins everything.
Hugs to you ladies
Nancy
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Oh Nancy. I am so sorry to hear about your dog and his diagnosis. Yes, 7 years is too young for this. Glad to hear you have pet insurance -- at least you'll be protected from some financial burdens. Best wishes to you and yours!
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Thank you ElaineTherese. My family cannot seem to escape from this rotten disease. I hope you are doing well.
Nanc
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I didn't even ask permission to post this, but I know we are all sisters and she would want you to know. This is from Pink's FB page, 19 hours ago.
"Here's a quick update. I have decided to stop all treatment, no more chemo or brain radiation. The last two chemos haven't worked and the last one I had to take 13 pills a day. So what I am on is home hospice care so I have a nurse come by once a week and she manages my medications and the goal is trying to keep me out of pain.
It's really cool because I get everything delivered from Medicare all my medications, I don't have to go to the doctor anymore, they come take care of me.
I have had a lot of you wanting to come by and visit me but I just can't right now. The best thing you can do is just pray for me and my husband and my mom who are taking such good care of me.
I am so happy because I know that one minute I'll be on my walker and the next I'll be in Jesus's arms. I have no fear or anxiety or anything I actually feel pretty good and I still have my quirky sense of humor.
I read all the texts I get, emails and Facebook notes but I can't answer you back so please understand that.
I will try to get better updating this"0 -
OY, kmntwins. Thanks for the update. Many prayers for Pink that hospice helps her to be as comfortable as possible. May she spend as many pain-free days as possible, surrounded by the people who love her.
How are you doing kmntwins????
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I saw her facebook post yesterday. I hope Rachel (Pink) is not in pain. I don't really know what to say. My heart is broken for her and her family.
Nancy
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Thank you for posting this, I'll add Pink and her family to my prayers.
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Just nowsaw this. Will be praying for you Pink!
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OK - so no updates on Pink's FB page, but on Haloween she posted a photo of her dog in a skeleton 'doggy sweater'.
Slappy - thank you so much for the hats. My hair is at a 3/4" pixie right now so my head is cold. I'm LOVING the purple cotton one. Is it crocheted? I wonder if I could make one?
Me - done with chemo and internal brachy (YIKES - very 'odd'). I'm having some vision issues and the eye doctor can't find a reason, so my MO wants a brain MRI, I also had some pain in the lower abdomen, so she wants another CT Lung, Abdomen, Pelvis. Woo Hoo - but seems imaging is the what they do when you have pain. Also, she doesn't like my implants, says they look different and I have capsular contraction and pain. She would like me to do DEIP flap, so take out implants, pull lower belly fat up and put it where boobs should be. I saw the surgeon, guess what, I don't have enough belly fat and I have a 31 BMI. He did say, the reason for the pain is I have teardrop implants, and the left one has turned sideways. So, he had a cancellation on November 21st, which I'll take, as I've met all my deductibles, so this will be free to me, 100% paid by insurance. To which my husband says, I'll have to get coverage for work and does this mean you will be missing another holiday due to surgery. Please, constant pain or missing Thanksgiving... I'm taking pain removal!!!
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kmntwins!
So awesome to hear from you!
Congrats for finishing chemo and radiation! Ugh about the scans -- hope they are all clear!
So, will you be replacing the teardrop implants with others? Good luck with your revision surgery!
I have some belly fat I could donate to you for DIEP reconstruction -- yeah, I know, it doesn't work that way.
I have actually lost 9 whole pounds in the last 8 months, so that's good. I'm still doing monthly Zoladex shots and taking my Aromasin like a good girl. I still have my port, which I get flushed every six weeks. Otherwise, nothing has changed. It's November, and I'm still grading my students' research papers. Looking forward to taking a sabbatical in Fall 2020 -- no teaching from May 2020 -- January 2021! Yippee!
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Elaine, you have kept your port since 2014? May I ask why? Mind you, I'm not really the one to ask, as I had to have another put in, in March, for this silly uterine cancer. Also, woo hoo 9lbs, that is great, especially since you are in essence in 'menopause' the dreaded word for weight loss. Dr. Chang, at Mercy, is supposed to be one of the go to guys, nationally, so, what he said was he would put in rounds this time, so that if they do shift, it will just be in that 'circle' and it won't cause pain. As to fat, I have some, but they want the pouch below the belly button, and mine isn't thick enough on one side. He thinks it is from the lipo, for fat grafting, back with the original implants. Since they took everything with the hysterectomy, I had to change from Tamoxifen to an AI, so I am on Arimidex. My bone scans aren't great, I have osteopenia, as I did 4 years ago, so better than osteoporosis.
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Call me crazy, kmntwins, but I like my port. (In fact, my nurses have told me to never get rid of it.) Actually, since I'm doing Zoladex (a monthly shot), it's not a big deal to get a port flush.
I did have full-blown osteoporosis, but my recent dexa scan showed that I'd graduated to osteopenia. Thanks, Prolia!
Good luck with your revision surgery, and keep us up to date!
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I still have my port from 2014. Yeah, I'm in a different place but no IV chemo right now. I would not give up my port for anything. It is used for all blood draws and scan injections. I have really bad veins so that is a life saver. The IR who put it in (fabulous doctor) said I could keep it for at least ten years even though the prevailing wisdom is five. This port is coming with me wherever I go next.
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Knmtwins,
yes, it's crochet. If you want to give it a try, lmk and I'll email you the pattern I use.
Shirley
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Just read a very sad post about Rachel (pinkninja). She stopped all treatment a few months ago. She is in hospice and the post on FB said she has very little time left. I'm not a religious person, but please pray for her and her family.
Nancy
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Thanks for the update, Nancy. I will pray for her and her family that they find peace. Good luck with your dexa scan!
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Thanks Elaine. Yeah I'm a wee bit nervous about the dexa scan next month, but oh well lol
Nancy
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Our dear chemo sister, Pink Ninja (Rachel) died around 3am. For those of you who don't know, Rachel 'found Christ' as a young adult and has a strong relationship with Him. I'm sure she is very happy to be on this next phase of her journey, although saddened for those she is leaving behibd.
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So, I'm recovering fairly well from the implant exchange. Since these are above the muscle, it isn't hurting as much, or at least that is what I'm thinking.
I woke up around 3am, I guess it was Pink saying goodbye. I'll miss her so much. I was so lucky to be able to sit with her during one of her chemos 2 years ago and then to meet her wonderful husband who came to pick her up. Although I feel like I personally know, each of you on this group, I always felt the closest to PINK. Maybe because her mother lives near me, maybe because her chemo center is only a block away from the one I'm using now, maybe because we would chat on the phone about our surgeries.
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Fly free, Pinkninja! I'm a Christian, too, and I believe that she is with the Lord.
kmntwins,
Thanks for letting me (not on Facebook) know about Pinkninja. In her posts, she had such a vibrant personality. I'm glad you got to meet her; I wish I could have met Mags before she passed. (She lived 45 minutes north of me.) Ugh; so now we've lost three sisters -- Mags, Pinkninja, and Kebab. Rest in peace, ladies.
I'm glad to hear that your recent exchange surgery hasn't been too bad. Hope you're getting some rest; this too, shall pass.
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Sending prayers for Rachel's family.
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Hi guys, just was thinking of you and wanted to say thank you and I love you. This was the best part of my getting breast cancer.
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Thanks, kmntwins. How are you doing?
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Hello everyone 🌺
I hope you are all doing well ❤ I haven't been on here in many years but unfortunately at almost 6 years Cancer free, I am back with Stage 4. I was recentlly diagnosed after finding an enlarged lymphnode behind my right collar bone. I went for biopsy but came back inconclusive so Oncologist ordered a pet scan. I have a mass on chest wall and serosal deposits (if I spelled tgat right lol) by liver and one lumbar bone. I then had a biopsy of spot near liver, it is not in my liver or any organs. That biopsy showed Cancer.. I am currently on monthly shots and kisquali pills and I see about a 60% shrinkage in my lymphnode in just about 8 weeks. My oncologist said 100% remission is attainable and this is very very treatable. It is recurrance of same strain I had before, no mutation but did spread beyond breast. I hope you all are doing well, We had a really strong team of Warrior's back in 2014 ❤ Sending love to all ❤ God Bless
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JoeysMommy -- I was sorry to read your news but happy to hear that your cancer hasn't spread to your organs. There's an awesome Stage IV section here if you need it. I'm doing OK; I've made it through five years of Zoladex + Aromasin, and have two more to go. Of course, that regimen gave me osteoporosis, so now I'm on Prolia (which brought me back to osteopenia). I always pray for my breast cancer buddies; I don't know if you're religious, but I'll pray for you, too. (Can't hurt, huh?) Please take care of yourself and don't be a stranger. I'm rooting for you!
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