IBC lounge: roll call, support and just a good place to hang out
Comments
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Valstim, as a brain mets person, I am so glad for you a tumour did not cause your stroke. I think of you often and hope your recovery goes well.
I am still recovering from my whole brain radiation. Finished the Sept 23. Mainly feel tired (Steroid is finished) and my hair is starting to fall out. Bald the second time around is not easy but at least when gone, I can put some lotion on my head. Feels pretty dry and itchy.
Did manage a 20 minute walk. Am planning to be as active as possible to try to spur my recovery. Have heard the WBR can cause fatigue to peak two months out. Exercise worked well during my harsh chemo days. Was not too fatigued then so figure that exercise may help radiation recovery as well. I also plan to stay as active as possible since I don't have mets elsewhere. I apparently am rare to have brain only mets, though being HER2 + should not be entirely surprised.
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Hi 'Guys'. I've been away for a while but back.
Aug. was 7 yrs since IBC DX. Still doing great - saw my PA last week and all she could recommend was to increase my Vit D. I have dealt with SAD (Seasonal Affective Disorder) for 20+ yrs since we moved here and I had forgotten to increase my Vit. D pills and start using my light box in Aug so my 'fault'.
Excited about next month - I will be a Volunteer River Guide for a Casting for Recovery Retreat. Look up CfR on line - it is a nationwide (USA) program for BC survivors that is a weekend Retreat and part of it includes flyfishing. I've been a fly fisherman for a while now and was lucky enough to be able to go to a Retreat last year - this year I'll be a River Guide.
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Congrats on seven lucky years Kicks. Good luck with the river guiding. I read a report recently that saidfly fishing is an excellent rehab activity post mx. Is this correct?
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Meadow enjoy camping. There's nothing like good fresh air.I live in a small community where half my neighbors are part timers.In the winter when life slows down, I can hear the roar of the oceanwhile falling asleep. I am seeing my oc on Oct. 5.
Hurry Mara, no more steroid, glad your days are mbetter now.
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Kicks, we've missed you! Welcome back. Congrats on the leadership activities; I would love to go with you down a river with a fly rod.
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Yes it's lovely to hear from you Kicks, and I would join you on a virtual fishing trip too! Although my skills would be more in the line of picnic food than fishing.
So far so good on the Kadcyla. Managed to get to the cinema for the first time in ages to see the new Beatles film right in the heart of Liverpool, just great,
Mini
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MM, are there any side effects with Kadcyla? Seeing the Beatles movie in Liverpool, how appropriate!
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Hello, I am new to this site. I am not a diagnosed BC patient but I am currently dealing with a lump I felt but doc said it looks like a rib bone with tissue. Still waiting for my mammo. Anyway, that is not the reason why Im posting on this thread but I just got teary eyed while reading your posts. You guys have become real friends through the years and supported each other like family. Im so proud of you. I wish you guys all the best. You guys are the coolest people. Thanks for inspiring people like me, making us realize that a cancer diagnosis is not the end of the world.
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Thanks AnxiousRN, this cancer category is pretty rare, so most people have bonded as best as you can on a forum. This group reformed after a previous 80-page IBC forum went offline when the originator left BC.org. It is very sad that the much-loved PurpleMinion, who resurrected the topic, passed not so long ago. But, yes, we're all taking medical paths that will likely lead us to the desired NED zone. Do spread the word that this is a good place to come for IBC info.
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Hi TT, I have had some side effects with the Kadcyla. Headache and quite nauseous on days 5 and 6 but I am much better now. Feeling like I'm getting my mojo back at long last.
WorriedRN, hope you get your mammogram appointment soon. The waiting for appointments and results is difficult for everyone.
I'm bracing myself for pink everywhere, even saw bales of hay in pink plastic the other day. Sheesh.
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congratulations kicks on seven years. Enjoy your fly fishing and fresh air. Sounds like a blast.
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Glad the SE's on the Kadcycla are manageable mini.
I am officially bald again. I got tired of my hair falling out, would have taken forever and been messy so I cut it myself and shaved my head. Looks and feels much better and less sore without hair. I look like Lex Luthor again.
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I found that article on fly fishing as form of therapy to aid in recovery from bc. Read it HERE.
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Thanks TT for that beautiful link on fly fishing.Love you all this is a great support.
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This is a very interesting article in that the writer is a 10-year veteran of IBC. Nicely written too. HERE
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I just read it. It is so completely true. I get sick of people who think cancer means that all of a sudden, everyone gets spiritual about it. Not everyone does. Nothing wrong with those who think they had a positive change in their attitude or how they live life but not everyone is like that.
People in my family are similar. They seem to think because I have gone through surgery/chemo/radiationX2 that I should not complain or become distressed about feeling just plain crappy most of the time as I do right now.
I reminded my mother that just because I have cancer and will always be in treatment, my overall personality will not change most likely. I complain when I don't feel well, always have. I am not the person who is sick as a dog who has the ability to be stoic about everything. If I have a hangnail, people will know. I tell my family that if I want to complain about feeling shitty, I will do it. I don't need counselling about it, this is just me. Accept it or not.
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Kicks, Welcome back! I remember you going to the fly fishing excursion, how fun for you to be a guide. You go girl.
Mara, how are you feeling? Hopefully better every day.
Anxious RN, Thank you for the kind words of support, made my heart happy.
Mini, oh, that must have been magical in Liverpool! I took my 2 grown sons, and one DIL to see Sir Paul McCartney in July...it was at Busch Stadium here in the States, which seats 43,000 people! It was my 3rd time seeing him, going back over 23 years, and he still rocks the house. Very fun, and fun to see my kids loving it too.
Travel, glad you have a surgery date, enjoy that prostate while you can...and thanks for the links
Welcome to the newcomers, hugs to everyone.
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Thanks for asking Meadow. I am feeling better than I was. Still pretty fatigued but am able to eat normally which helps recovery I would imagine. Sleeping better at night without the steroids. Have been exercising to ward off fatigue as well as stress busting too. Bald is much easier this time around I find now that I shaved my remaining hair off. Was falling out but hurting my scalp so got rid of it.
Hope all is well with you too. The camper idea does sound like a lot of fun for your grandkids.
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I just wanted to say "hi". Hi. I don't post much but I read your posts every day. I'm glad that things are going better for everyone.
TT, thanks for the article.
Mara, the steroids really suck. It's good that you postponed started working. I've an appt next week and I was planning start working at the end of the month but I think I'll pass. I'm still too tired and my head can't handle all the noise.
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Hi All
Any one on here with stage IV IBC with status ER+ PR+ HER - that has been on Afinitor? I am about to start this drug and only found one other on here that has used this drug with Aromasin.
Just wondering the side effects or any info? Not sure I like the side effects of this drug and was hoping to get feed back from other members.
Thank you!
Kimba
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Found this discussion on our site about affinitor. Hope it has lots of info for you.
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Mara - Thank you so much!! I'll check it out
Warm regards,
Kimba
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Hi to all, I am having a pet scan on the 15th. My doctor are great in the way they listen and address my concern. They couldn't see the redness I see when in the office but luckily I took a picture on the 20th of last month and they both see it there. I still see the redness but it's not doing much. I guess it's the lighting. My nipple is somewhat inverted.
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Hello everyone,
Had 2nd Kadcyla infusion this week. Too early to notice change in skin mets yet, hopefully after 3 to 4 cycles they will respond. Got a great new dressing Alleyn Life from wound care nurse. It has a colour change indicator so I know when it needs changing without having to subject the skin to unnecessary trauma... Very clever design.
Good luck with the PET scan jcpriest.
Take care all,
Mini
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You really have been through the mill Mini, so I hope the Kadcyla goes well for you. I've heard such good reports about that drug. The new dressing sounds interesting, so do let us know if the colour change indicator really works!
My robotic prostatectomy has moved forward to 21 October. Can't wait. Then there's the bragging rights as in: I've had a mastectomy and a prostatectomy! Is that rare or what?
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Hi TT,
I am so pleased that you are having your surgery next week and not having to wait til November. And yes you sure will have major bragging rights. There can't be many men on the planet with ibc and pc.
Take care, mini
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>Then there's the bragging rights as in: I've had a mastectomy and a prostatectomy! Is that rare or what?
Traveltext, maybe you should play lottery :-/
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Having won big time twice in the past two years, I'm considering playing lotteries more often. Or maybe not.
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Thanks mini for the thoughts. We had a bad storm last week and the scanner was down. This time I made the appointment earlier. The sooner I get my morning coffee.Wishing you a smooth recovery Traveltext.
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Hello All
It's been a while since I checked in. Working on my online doll shop again. It gives me great mindless joy. I've been an avid doll collector for decades but the time has come to part with a lot of my babies. My DD came up with the idea of an ebay store and it's been a success so far. More fun has been going through all the stored dolls.
I'm doing well considering the stroke. Stronger each day and and keeping my mind focused on a positive future and trying not to mire my thoughts with recurrence.
Going to a survivor workshop put on by my MO. Will be interested to see what goes on. I go to a very large cancer center and never heard of this until I got the word I was NED, or cancer free.
Best of thoughts to traveltext and mini and all who are undergoing tests or surgery or treatment. What a unique club you belong to traveltext. Ofcourse you didnt request membership.. But we look forward to hearing from you.
Val
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