Starting chemo July 2014
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Hi Elaine There's,
Thank your for the prayers, they are truly appreciated ❤ i am on same shots plus kisquali pills 3 weeks on 1 week off now for the rest of my life. God willing will be many years 🙏 I have an Amazing 16yr year old son to live for and of course live for me as well. I was saddened to read about our three sisters who lost their battle, i said a prayer for them last night. Happy to hear that you are doing well. I will bd praying for you as well🙏❤ I will find my way into the Stage 4 feeds but for now I'm focusing on getting through my first 3 month Pef Scan in June. Trying to remain positive and strong although a challenge during this pandemic with both my son and I having compromised immune systems, him being Type 1 diabetic. Stay safe and healthy, you're in my prayers 🙏
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Hi Elaine Therese,
Thank your for the prayers, they are truly appreciated ❤ i am on same shots plus kisquali pills 3 weeks on 1 week off now for the rest of my life. God willing will be many years 🙏 I have an Amazing 16yr year old son to live for and of course live for me as well. I was saddened to read about our three sisters who lost their battle, i said a prayer for them last night. Happy to hear that you are doing well. I will bd praying for you as well🙏❤ I will find my way into the Stage 4 feeds but for now I'm focusing on getting through my first 3 month Pef Scan in June. Trying to remain positive and strong although a challenge during this pandemic with both my son and I having compromised immune systems, him being Type 1 diabetic. Stay safe and healthy, you're in my prayers 🙏
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The pandemic definitely stinks! My aunt,(who has schizophrenia, Parkinson's, and Type 2 diabetes) is intubated in a hospital right now and is suspected of having Covid-19. She'd been living in a nursing home in northern CT; my parents thought she'd be safe there because it was far from the center of activty in CT (close to NYC). But, alas. Hold your son close -- the diabetes/Covid-19 stuff is scary. Stay safe!
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Sending prayers for your Aunt 🙏❤ My Uncle passed away from Covid the end of March. He was 75. He had 5 day fever at home but no cough or anything then he couldn't breathe.. They took him by ambulance to hospital, he passed in less than 24hrs. Truly heartbreaming. Stay positive, there are very many seniors that beat Covid ❤🙏
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Thanks for the encouragement, JoeysMommy. I'm sorry to hear about your Uncle. My aunt is about the same age, and of course, we can't visit her. You try to stay positive, too. Everything is so crazy now.
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JoeysMommy so sorry to hear your news. We have ladies in our local support group who have been stage 4/Metestatic for years, but I will still keep you in my prayers! Sounds like they might have caught yours relatively early. I know it was a kick in the pants when they told me last year I had cancer (uterine, so not a recurrence), but I'm over a year from my hysterectomy, and 6 months from my last radiation treatment and seem to be doing well. I don't 'qualify' for a Pet, so who really knows, so I'm trying to live life to it's fullest, but my almost 13 year old can be a challenge. As to a 16 year old, yep, I got 2, both with asthma, so this Covid thing has us worried too. My husband (COPD, Type 2 Diabetes, High Blood Pressure and BMI way over 30) is a night manager for Home Depot's Met Team, so still in the stores. We are thankful for the paycheck, but scared. We all take our temps every morning and our pulse ox every day or two. That is how we are monitoring, as I've heard the reduction in blood oxygen happens slowly, then like your uncle it is extreme and too late in many cases. I'd recommend everyone do this also. Right now, both thermometers and pulse oximeters are hard to find. You might want to call ahead and ask the pharmacist (some have them behind the counter for us 'high risk') also try your small local pharmacies, I've heard they seem to still have them, just double check what a reasonable price is, so you aren't 'taken'. (edited to fix spelling errors)
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Joeysmom: Sorry to hear of your status change, you think you've got it beat when you pass that 5 year mark, will add you to my prayer list.
I finished my 5 years of my AI and since November have lost 10#. So much for my oncologist telling me I probably wouldn't feel any different. I rented an apartment in a 55+ community in January, sold my house in March, a week before the pandemic broke out. Love my new apartment, it has more square footage than my house had! For our protection, the building is in lockdown, no visitors, we have to wear masks if we're out of our apartment, no shopping in stores- just drive threws. But I can go out in my car and go birding if I'm alone or socially distancing. So far no one in the building has tested positive.
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Joeysmommy sending you so many hugs. I am sorry to learn the cancer came back. I'm glad your oncologist feels you can get 100% remission. That's great. I hope you are feeling well. Were you still taking tamoxifen when the cancer was found?
My sister was diagnosed with breast cancer in December. She had genetic testing since I had breast cancer too, but nothing was found. She is currently doing chemo and has one treatment left. I talk to her just about every day because I know what this is all about (as we all do)
I am sorry to hear about your Uncle. This Covid virus is scary stuff and I fear it's only going to get worse since so many states are opening up. California is not although some restrictions are being lifted. I am glad we have a governor who is doing it right.
So far I am doing fine. Going for a mammogram and ultrasound in June and will see my oncologist then too. I was switched to femara a few years ago as tamoxifen was causing problems.
My dog (the one on the right in the pic above)is going through an odd cancer as well. He's been battling for 10 months and going strong. He has carcinomatosis (very strange). He had a pleural effusion (fluid around the lungs) and over a liter of fluid was drained😢. We did a CT scan, xrays, ultrasound and no mass was found as pleural effusions are usually secondary to something else. They believe the cancer is on the lining of the pleural cavity. He is currently on a low dose daily pill of cytoxan. He just started so time will tell. Thank God for Pet insurance
Any how I hope you are feeling good and thanks for reconnecting (sorry for the circumstances). Hang in there and check in often ❤️❤️
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I haven't been on here in a long while. Hope all my July 2014 ladies are doing well!
Shirley
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Hi - how are you doing??? I'm doing great, the twins are seniors and my little guy is a freshman. Since my uterine was a rare and aggressive one, and I was having groin pain, my oncologist ordered a PET. Seems at 3 years, I no longer qualify for CTs twice a year and all scans become a harder fight with the insurance company, so I had my first PET, instead of my last CT. Seems all is OK. Mind you, I still have my port. Maybe when I see her in May of 2022, we will talk about removing it. She told me after chemo in 2019, I could remove it, but I kept it in for good luck and because it was hard to find a vein for the CT's. I miss Pink, she did her treatments at a chemo center next to my oncology office and I always think of her. Makes me sad. So, happy belated Chanukah, Merry Christmas and Happy Holidays. May 2023 bring us all joy, good health and peace.
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Good to hear from both of you.
I'm doing fine, moved my 95 year old Dad from Minneapolis to Moorhead in May so now he's only 10" away. He's in a one bedroom independent living facility which has nursing home and memory care units if he should need that. He has settled in well, eats 2 of his meals in their dining room where he's made new friends.
Merry Christms
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Hello ladies!
Glad to hear you're all doing well!
kmntwins, I still have my port, too. My oncologist thinks I'm crazy and keeps asking me when I'm getting it out. My twins are 19! And my daughter is 22 and living on her own.
Puffin2014, good work, getting your Dad so close by you! My parents are fragile now, and they live six hours away by plane! My brother is doing a lot of the caregiving, as he only lives 30 minutes away.
Slappy-Squirrel, I still have one of your hats!
I'll be finished with six years of Zoladex + Aromasin in February. After that, only one more year! Alas, my last Zoladex vacation revealed that I'm still NOT MENOPAUSAL. I'm 54 freakin' years old! When will my estrogen go "Bye-bye"? I'm wondering if I should just have my ovaries out. Or, maybe I actually want some estrogen back! I'm torn.
((Hugs)) to all!
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With the change in the Forums thought I'd add a comment here to see if anyone is still following this one. Hard to believe it's been 9 years since this was started
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Hi Puffin!
I hope you are doing well. I'm still hanging out on Breastcancer.org because I'm still doing Aromasin + Zoladex. I'm still doing a mammogram every September; no local recurrence so far. I'm also due a dexascan this fall because the hormonal therapy led to bone-thinning. Thankfully, Prolia has worked so I'm no longer osteoporotic. Otherwise, life goes on.
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Hi ladies - glad you're checking in. I don't very often, but every now and then. I'm good. Have been off of femara for almost a year now. YAY. My new oncologist did the BCI test on my tumor and it turns out there is a 4 % chance of reoccurrence so femara wasn't really helping me. Though the percentage was low you never know with my luck. Hope you both continue to do well. Nice to hear from you.
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Oh Nancy! Lucky you with your BCI results! I also did the BCI test, and it turns out there is a 19% chance of recurrence for me. Boo hiss! That's why I'm still on Zoladex and Aromasin. Glad to hear from you and that you're doing well.
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Puffin, ElaineTherese, Nancy,
How wonderful to hear from you all again. I still have a Slappy hat too. My 19 year old twins graduated last fall, Mikey is at Mount St. Mary's in Emmitsburg, MD (only 30 min away) but living on campus and running at the D1 level, doing it with scholarships, working as a mechanic during the summer and loans. My cancer bills really hit our finances, so… His twin Caroline didn't do well from a mental health standpoint, so took a term off and is now in community college. I don't think she will pass all her classes, but, this allows her to remain our dependant for 2023. Jackson is running at the high school level, as he is now in tenth grade. Both boys are distance runners. I'm OK, I still have an odd spot on my left breast, what little is left since i had a mastectomy, it was biopied years ago and came back necrosis from the fat grafting. A lymph node popped up, because silly me, I'd had my Covid vaccine… it is ok, but that necrosis area popped back up. I need an MRI for it and a PET for the uterine cancer, just to be safe, but for the first time I've been paralyzed with anxiety and haven't scheduled them. Maybe because everytime I see my oncologist, I think of the last time I saw PINK, at her oncology center across the street. Still on an AI. I really think about all of us and miss those who have died but more importantly our comradery from 2014. Each of you have a very special place in my heart! - Kay
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kmntwins,
Thanks for stopping by and providing us with an update! My daughter is taking "the slow boat" through higher ed. She didn't like being full-time student, then switched to studying welding, wasn't talented at welding, got a full-time job, and now she's also a part-time college student again. OY. My twins are getting ready to transition from high school to a program for adults with disabilities.
I haven't been getting regular scans with Oncologist #2, other than the mammograms and dexascans. I'm not sure I'd be too eager for PETs and MRIs, either.
I often think about PinkNinja, Mags, and Kebab. Rest in peace.
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Wow, Kay, it really made me realize how much has happened when I read that your twins are 19 now!
I sold my house and moved into a 55+ building. At 71 I'm one of the younger ones in the building and still have good knees and hips so I volunteered to take care of the 30 perennial flower beds on the property. We're having a late spring (last week I shoveled a 5 foot snow bank off one of my flower beds), it's on the north side of the building and would have taken forever to melt down. I've been cutting back the tall decorative grasses, have one more bed to do and then the beds are pretty much cleaned up after winter.
I went on a 10 day Caribbean cruise with Celebrity in March with a group of birders. Each island we stopped at there was a van with a local guide that took us birding for several hours. We got to do activities on the ship in the evenings and the 4 days we were at sea. My roommate and I had such a good time we've signed up for the January 2024 cruise to different islands.
When I was finally able to visit Dad in Minneapolis after the pandemic restrictions were lifted I helped him move to a 55+ building in Moorhead about 2 miles from me. He's 96, and with his short term memory problems I'm really glad he's so much closer. He makes his own breakfast in his apartment but eats with friends in their group dining room for lunch and dinner. His legs were getting unsteady and he's now using the walker with a seat that I had used after one of my bowel surgeries. I go spend a couple afternoons a week with him, one day we watch a MN Twins baseball game and the other I go with him to play bingo (winners get miniature candy bars.)
Now that the weather is finally warming up in ND the spring bird migration is starting. I went out with a friend today for 7 hours and we looked at waterfowl at lots of sloughs, found 42 species of birds, 3 of which we don't see every year. Fun day.
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Don't know if anyone still follows this thread but thought I'd post an update.
The end of March I returned from a Caribbean cruise where a friend and I had hired guides on each island to take us birding. I hiked mountain trails to see parrots fly through the valley below us. A week later I couldn't hit my laptop keys hard enough with my right hand to type accurately, and couldn't legibly sign my name. An MRI showed a tumor deep in my brain in the thalamus on the left side - too deep for surgical removal and in too complicated a spot to do a biopsy.
So far MRI has shown no spinal tumors, CT has shown no tumors in chest, abdomen or pelvis. Lumbar puncture contained no malignant cells to test. Mammogram is normal. The going theory is this is mets from my breast cancer 10 years ago.
I have had my mask made for linear acceleration radiation, scheduled for Tuesday. However, I'm weaker and clumpsier every day and hoping we can move up the date to Monday. Last night I had an asthma/panic attack that sent me back to ER this morning. I'm taking a 4mg decadron pill every 8 hours which is causing some sleep issues.
I'm getting Home Health OT and PT, trying to use my right hand when possible with adaptive foam so I grip better but hand tires quickly.
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@puffin2014, we're glad to see you back again, but we're so sorry it had to be for this reason. Hope you get responses from the other community members soon. We wanted to recommend our brain mets thread, but we've seen you've already posted there. 😊 Now, we have a new way to connect with others through our virtual Zoom meetups, a place where you can ask and share questions live. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups. We hope you'll join us
Warmly,
The Mods
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Oh, Puffin. I was so sorry to read about your new tumor. I do hope that radiation helps you retain some quality of life. I am amazed at some of the women on this site (e.g. Mara) who have lived with brain mets for years. ((Hugs))
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Thank goodness I wanted to come say hi and re-connect! Puffin, glad you got that wonderful experience, but this tumor thing stinks! Hiw are you doing?
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I've had radiation, developed headaches and had to go back on steroids, which stopped the headaches.
Have very poor fine motor skills in my right hand, slowly improving balance and strength right leg but need to use walker for everything. Will have MRI Jun 25 to see if I need more radiation
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Puffin,
Thanks for updating us about your situation. Praying that your MRI shows that you're all clear and that you won't need more radiation. Hoping that with some physical therapy and the passage of time, you'll become more mobile and less clumsy. ((Hugs))
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Oh wow Puffin I am so very sorry to read this. I haven't been to this site in months so I'm glad I decided to check in. I sure hope you don't have to have anymore radiation and that the radiation you did have really helped. Please continue to keep us posted. Hugs to you
Nancy
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