IBC lounge: roll call, support and just a good place to hang out
Comments
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Scwilly, thanks for sharing your results. Hmm, interesting, weird that some things got smaller and other things bigger. Hmmm. Well hmmm. I hope the Ibrance will help and be tolerable.
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Scwilly, glad for you that the liver only remains affected. Hope the Ibrance is tolerable for you.
Mara, you are having a great run with your treatment. Still NED below the head must be a huge relief.
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hugs to Scwilly and mara, Amarantha across the water too.
Ms Sherman, shy cat, Val, jc, and TT, hugs to you and everyone who has posted recently, and all you lurkers too, you know who you are, (wink)
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Thank you all for your best wishes and hugs. Seeing my Doc today so hopefully I will come away more informed. I do feel this disease can be individual andmysterious in its course but I try to remain pragmatic and take each day/stage as it comes. I am so thankful there are so many options, with more coming each year.
Mara I hope you continue to stay as NED and stable
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Its nice to hear good news. Congrats to Mara and Scwilly. I had my 6 month check up
Everything ok This phone has a mine of its own. Have a good wk end to all.
Jcpriest
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Hello to all
Hoping your new med works sarah. Glad you are still NED below the head Mara.
Val
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Had an appointment with my Doc today - and feel so much better. We went over my scans and I feel more confident that the Arimidex is actually doing some good, even if not to all spots! Hoping Ibrance can boost this effect. Also went over a lot of question sIh ave had outstanding. Happy weekend to you all.
Sarah
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Hello everyone! This is the Atlantic Ocean on the West coast of Ireland. Had a great visit there meeting lots of friends and family. On my return had my 8th Kadcyla infusion.
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What a great pic Mini, such a wild looking coastline. So glad that you had a good time and that you've had your eighth infusion. How do you feel?
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Hi Traveltext, overall I am doing pretty well. I tend to have a rough day 4 to 5 days after infusion but week 2 and week 3 are much better. I have chronic fatigue so cannot work but once I rest daily I can do some "normal things". Because I have a lot of underarm involvement with the spread of the original cancer I am quite limited and am doing daily exercises to try and increase mobility. I have nurses calling 3 times a week to sort out the dressings. The wound looks better than it did but it is notoriously difficult to heal these fully so keeping it under control is the aim.
Gee, bet you weren't expecting such a long reply!!
Mini
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Well, Mini, I wasn't expecting you to say "great" after the year you've been through
. You are an inspiration with your frankness and general cheeriness, and I'm sure I speak for all here in hoping that the next year will be good for you and that the drugs do their work. And, perhaps, that you can get back to your job as a community pharmacist. How many more infusions are planned?0 -
Hello all
beautiful pics mini and glad for the update on how you are doing. As traveltext says you are an inspiration. I'm doing as well as expected after a horrific 2016. taking it one day at a time. As my breast surgeon said at my last follow up last week: The more we can get some distance in the rear view mirror from dx the better. He is pleased with my progress. I see my MO in a few weeks. I don't expect anything earth shattering as so far I'm not having any symptoms. she will poke and prod. as expected. I only see her every six months.
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Hi Valstim52, Good to hear from you. I hope that this year is a much better one for you than 2016. I trust that you are making a good recovery from your stroke and that your dear husband is fully recovered from the allergic reaction he had at the start of the year. I really like the imagery of the rear view mirror and distancing ourselves from cancer.
Traveltext, to answer your question about how many more infusions I will have.... Well it's a question not even my oncologist knows the answer to. The plan is to stay on the Kadcyla indefinitely as long as my heart and liver functions are withstanding it and I am showing some response. That is the most difficult part of where I am now, dealing with the uncertainty. I cannot make plans too far ahead in case my situation changes. But I am learning to live with my "new normal" as is my family around me. I have wonderful support and that bouys me up.
Mini x
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Mini, thanks for sharing the lovely picture! I agree with TT, a wild and beautiful coastline,
Val, Hugs to you!, Yes, I am hoping for a calmer, healthier 2017 for both you ladies...and a healthy year for us all.
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Hi Mini, Meadow, Scwilly, Jcpriest,. mara, aramantha and all others.
Mini my husband has completely recovered from that horrific scare. It shows how quickly life can change. He has no side effects except for a sensitive throat. 6 days on a ventilator.
I'm hobbling along. One of my knees is now bone on bone, I can't do a knee replacement this year. I just want a year of peace. The pain is manageable with steroid shots. Hoping I can hold out. As for my stroke symptoms, some are getting better. Others are the same. I believe my mobility has been affected by the stroke and knee combined. I'm in physical therapy. Doing pool therapy as well.
Interesting how when I first learned I had BC and inflammatory, I thought of impending death. This thread and others has shown that even if it progresses we still have hope to live. Or in the case of my husband I have learned that we all are a millisecond away from a life ending event, just with BC we are more aware.
As you can see, at his bedside in ICU i did a lot of thinking and soul searching.
Forgive my rant, and musings. Don't know what I would do without this outlet. No one else really understands. They try but can't. As a good friend and fellow Bc friend told me: Be grateful for those that try.
ok, i'll stop now. I will do my share in keeping this thread going. It was my lifeline (the old thread too), when I first started this horrid journey
Good thing: I am again writing short stories. I've been published in magazines like Readers Digest, Redbook, Goodhouskeeping etc. I have offers again through my agent for me to start again. I have several going in my head at one time. I've been doing this since the early 80's. It was very lucrative in print magazines during the 80's and 90's. I stopped about 15 years ago. Like most writers I have lots of material lying around. Now with my 'new normal' I have more material.
val
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Hello to all and thank you for sharing Valstim. I am also hoping for a quite year medically. Plus I am surprise to still be here. I am thankful but still cautious. Three year out and feeling stronger better appetite. God bless you all
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Mini, glad you could go to your trip and I'm hoping that Kadcyla is working.
Val, how lovely that you go back to writing!
I'm not very okay. I have chest pain and I don't know if it's fibrosis or I've done too much at yoga or something else. I'd really really really love some "normal" time. Of course not sleeping enough at night doesn't help either.
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Valstim, you must have enough material for a whole book now
Glad hubby has recovered and I hope you can get by mobility wise until you get your knee fixed. That sounds worse than anything else you have.jcpriest, glad you're feeling well and trust the year is quiet on the medical front.
MoreShoes, you are amazingly resilient and I hope you solve the chest pain issue.
I've been invited, along with my bc buddy Rob, to a national breast cancer summit being held next week. So that will be two men and 200 women, just the neat one percent. Should be interesting!
Keep posting everyone.
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Hi Traveltext,What a nod to you and Rob. Have a good time and I hope you learn something helpful. You have had quite the experience.
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Good morning everyone,
I'm so excited to have accidentally come upon this thread-seems like it's a good place for me to "check in" with others similar to me. I've been on & off this crazy BC roller coaster for 6 1/2 years and with each new dx comes a new set of questions & concerns. It was so wonderful to read Mini's post of learning to deal with each day as it comes. I'm a school social worker and quite "a planner" so you can imagine that this last diagnosis of IBC last spring totally took me off track (again). Then I "restarted" Herceptin/Perjeta which seemed to be working but then, BAM- not working.
So.... now onto Kadcyla (I've had 3 infusions so far). I must say, I'm responding quite well and my boobs (well, fake boobs) appear to be clearing up (as my onc puts it best, "they don't look so angry anymore-for which i started cracking up). My bloodwork indicates some real good positive changes as well. Most importantly, aside from the fatigue, the side effects are quite manageable. Those of you on Kadcyla-how are you doing with it? The biggest problem I'm really having is trying to stay truly happy just being "in the present". While I have wonderful things going on (i.e. my daughter's 16th birthday party, planning our summer vacation, my work, etc), my mind drifts over to the "dark side" & the thoughts of what I might eventually miss out on creep on in. I know how blessed I truly am but some times it just seems so damn unfair.
OK-enough of my babbling and thanks for listening. I'm happy to have found this thread and look forward to hearing from everyone (it's crazy how we are all from such different places in this big world). Wishing everyone a wonderful week ahead!
Traveltext- Wow! good for you for attending the summit. I do have to say, that's courageous-a group of 200 women, even without BC, could be quite a challenge! LOL
Take Care
Fran
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Hi Fran, I think I've seen you on the Kadcyla thread as well. I've been on Kadcyla for several months now and actually some of the side effects that I experienced early on seem to be getting better. I've mostly struggled with neuropathy but can't say for sure that it wasn't lingering effects of Taxol, which was my previous treatment. I also have a bit of fatigue but try to just luxuriate with naps from time to time. Overall though, I find Kadcyla allows for a good quality of life, at least for me. My last PET scan, my first since switching to Kadcyla, showed no metabolic activity - so it's working!
I know what you mean about trying to stay in the present. It can be really hard. Little things like a character in a movie dying of some sort of cancer invariably makes me think about my own mortality and I can get quite morose. But then I think about all that I still have in my life, despite stupid cancer, and I think that if I can just keep on going maybe the next, best new drug will come around and we'll all be fine. Maybe it's a form of denial but a little denial helps me deal with reality which frankly, still seems unreal to me.
So, anyway, hang in there and keep on keeping on!0 -
Traveltext, how was the summit?
Fran, welcome. I don't have experience with Kadcyla. When I'm feeling blue, I'm gentle to myself and just let these feelings be. Apparently, I need to feel like that at the moment. As long as the moment doesn't last long. Then I plan something nice for the immediate future and it helps.
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Moreshoes, the Summit starts today. Will report in later in the week.
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Thanks to everyone for their kind & encouraging comments-they are much appreciated. I will definitely try to continue to focus on all the wonderful things that I am so very blessed to have in my life. This past round of Kadcyla actually went better as I allowed myself more time to rest over the weekend (rather than running errands and pushing myself)-definitely seemed to help a lot.
Traveltext-good luck at the Summit
Wishing everyone a good week ahead
Fran
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Hi all, and a warm welcome to you Fran2014,
Had my 9th Kadcyla yesterday. I always lie low for the first few days afterwards and rest a lot. By week 2, I am much better and able to do some normal chores or coffee with friends etc. My oncologist, who looks at my skin mets each time, called it static yesterday so that's good news. Static or stable is music to my ears!
Traveltext, looking forward to you reporting back from Rob and your experience from the Summit.
Valstim, good to hear you back to your writing again. My son is studying English Literature and Creative Writing so I spend a lot of time proof reading!
Keep posting,
Mini x
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Well, I've kicked the show off with some pre-Summit publicity.
http://www.abc.net.au/news/2017-03-15/male-breast-cancer-survivor-calls-for-more-awareness/8356578
So glad things are looking up mini. Music indeed.
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What a great article to kick start the Summit Traveltext. And the picture speaks louder than words. Looking forward to reading your feedback from BCNA. Good luck with it all.
Mini
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Traveltext, great article!
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what a great article Traveltext.
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Awesome article!!! So glad you are sharing your story and wish you all the best at the conference!
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