IBC lounge: roll call, support and just a good place to hang out
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I am hanging in Mini. Glad you liked the image of the Kadcycla blasting the little bastards. I imagine my brain radiation doing that. Also happy to hear you had a good visit with your brother.
On day 3 of 10 of my whole brain radiation. Still find the mask freaky and hot, treatment does not take long. Woke up tired, bit nauseous but otherwise hanging on. Will be glad when it is over and when I can come off steroids. Hate them though they are necessary as SE from the radiation would be dreadful ie worse fatigue, nausea, headache, pressure, seizure. I will take a bit of lack of sleep over those any day. Should be done them Oct 1st according to Radiation Onc.
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I wish you well Mara and your courage is gratifying. I need to ask my doc about mets and some of the other language I hear. I get exrays when something feels different and a lot of cbc but that only tells you so much. I try not to worry,but it's not always easy. People don't know much about inflammory breast cancer.
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Mara and Mini I wish you the best in treatment.
Saw MO and she won't see me until next year. Told me so far I'm NED and to go live my life. No more scans unless I have symptoms. I know the drill, was here 24 years ago.
We discussed some of the new treatment options being discussed for TN, like Actos, and Metformin and xeloda. All encouraging but not sure about them yet.
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Valstim, Try to rest easy with your NED status. Hate the throwaway line "go live your life" but as tough as it is, that's the best option. Hope posting on BCO remains a part of your life, since, as a two-timer you have lots to offer the community here.
Encouragingly, for you and all of us, there are drugs available and more around the corner.
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Thanks so much Traveltext. Yes go live your life, ok and try not to worry about recurrence, every ache and pain. Yes as a 2 timer, I will stay on BCO and try to enjoy the good news. Hard to do though. I do remember last time it was hard, but I did it.
This has been a lifeline. No way will I give it up.
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Valstim, I agree it is hard to hear just go live your life. I agree with the statement but as you are aware from before, it will take a long time to be able to do that. My rule of thumb when it came to unexplained pain was that if it lasted two weeks or became intense, I would scream for a scan. This rule of thumb helped me NOT to continually mistake aches and pains as new mets. As it turned out, I am cancer free from the neck down.
I do not count my brain met for the above suggestion too much because my symptoms were not obvious. Biggest thing I would say if you worry about that, if there is ANYTHING that bothers you, whether it be muscle spasms in a weird place, neck pain you did not have before or vision disturbance (ie aura etc), request a scan. The brain stuff is not always obvious in the same way pain could be from bones or liver etc. My symptoms were much more general and probably went on for months before my swelling and met came up. I assume they track your brain anyway from your stroke (was extremely sorry to hear that for you). You have my best hopes that you stay NED for the rest of your life.
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Second mara on the two weeks, and would add that my MO said the pain should be persistent and progressive.
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My MO said the same thing, persistant and does not get better. Mara touche on the brain. Since I had the mri and cat scan when I had the stroke, it was a relief to know for now the brain is clear. I had a pet and bone scan earlier, and chemo does not cross the brain barrier I've been told.
Yes now I have had all kinds of scans and test for my brain that I didn't know existed, due to the stroke. So far the testing is more grueling than some of the weakness I'm having as a result of the stroke. Then there is the therapy, it's really grueling, but I know it must be done.
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Hi,
I'm just checking in here...diagnosed Aug2, 2013 at age 70. I had the ACT, right side mastectomy, and radiation. The surgeon was unable to completely remove the tumor. I had two of them, the bottom one was 6 cm and the one on top was 8 cm. ..I am left with a 3 CM tumor which my surgeon said was in too dangerous of a place to remove. I have it nicely controlled with Letrozole..and my onc said that if/when that fails he wants to do Ibrance. However due to the cost it may or may not be an option for me...that is something I won't worry about now...I'm stable and happy about it!!
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Welcome JudyGoebel, great that the Letrozole is keeping the tumor in check. How expensive is Ibrance? Keep us posted on your progress.
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From what I know it's around $10,000 per month, possibly more..I doubt my insurance would pay that much.
Thank you for the welcome..
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Judy, welcome. I like your attitude :-)
Val, the NED is great news of course. Go on with your life seems so empty, but what else is there to do? Only now I start crawling back to "normal" life. I was planning to go back to work in a few weeks but I'm so tired. How are you after the stroke?
Traveltext, how are you doing? Are you still busy with scans etc or you've started treatment?
Hydranne, what is H&P infusion? I hope everything is fine.
Mara, did you finish with the brain rads?
Mini, hope you enjoyed the nice weather the last days and your mini vacation.
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not sure how to do this. I always mess this up .
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Sorry about that. I am going to have a colonoscopy tomorrow. I had a barium swallow and nothing concerning . If the colonoscopy is clear I have to assuming it's my eating habits. The chemo destroyed a lot of taste buds . I not sure if that why I still eat a lit of crackers instead of my usual salad or not. I still try to eat well but doesn't always work. Love
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Thanks for asking More Shoes. Am halfway through 5 of 10 brain rads. Am looking forward to being done them. I HATE the steroids, they have diminished my appetite and caused upper and lower GI issues but pushing on with the eating. I know once I am done the roids, my system will be better. Not too much fatigue yet, imagine that will come later. No cognitive or skin issues yet. Still have hair (for now) but will be glad to put this part of treatment behind me. Only issues I have currently is the mood swings (awful) with the steroid but NOT going to ask for antidepressant since it would not kick in til after am done. I usually swing back to normal after done.
Hope everyone else is doing as well as possible too.
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All good here, thanks MoreShoes, enjoying my last weeks with a prostate. Scans show disease is confined and surgery booked in for 9 November.
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Thanks all for the kind words. Traveltext so glad it's confined and you have time before your surgery. Mara here's to still having hair. Hoping your treatment goes well, same with you Hydranne. Welcome to the newbies.
I'm taking therapy at a stroke clinic . It's grueling but i'm getting my mobility back, and my memory.
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Valstim-glad to hear mobility is returning as well as memory. That must have been so hard at first. Myself, will be glad when my brain rads are over and hope I can come off the nasty steroid. One thing at a time. Only four more zaps.
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Thanks Hydranne for your concern. Everything went well. It might be my diet catching up to me. I still eat a lot of crackers for dinner. Working on salads again,I use to love salad. Pushing forward. Glad things are looking up traveltext.
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Hello all, A good news day for me. My CT scan was clear, skin mets showing as HER2 positive on FISH test so my new scheduled chemo Kadycla went ahead as planned.
Mara, only a few last zaps to go.
Valstim52, so pleased to hear that you are continuing to improve
Welcome JudyGoebel and JC priest. This is a great help and support to me. I know what you mean about feeling tired a lot Hydranne. I have not been able to work since diagnosis in February.
Traveltext, really value your input to the forums. You are very well researched and post great links which makes info easy to access.
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Mini - glad to hear CT clear (aside from the skin mets). I am told that Kadcycla is very doable. Similar SE to Herceptin so should be mangeable and it usually does a great job of making people NED. Hope it does the same to you.
Three more zaps, talked to rad onc and asked to drop my steroid dose since was not having any brain swelling pre radiation. (Steroids making me REALLY moody, to the point I worry about myself) so he gave the go ahead to start tapering to be done by monday. He agrees my nausea was more to do with the radiation, not a brain swelling which is why it was upped for a few days. I am done rads by Friday. Woo Hoo.
Am going to take another month off from work, they wanted me by Oct 1st but not expecting fatigue to be done by then so got extension to Nov 1st. If I am feeling recovered, will go back sooner but no point going back only to have to take time off again. Still concerned about what are listed as common side effects ie memory issues etc but cannot worry about it til it comes up. Still did not have another option to treat the tumour either and given it was over 8 cm, would not want it cropping up too soon elsewhere in the brain.
Hydranne - glad to hear the H&P is working for you. My MO plans to put me on either Herceptin or H&P, though Canada is fussier on how to get the drugs. If she can just use Herceptin to keep me NED for now she will or else she may put me on H&P together which I am aware of the toilet SE. I am NED from neck down (small miracles) and hope to stay that way. Only problem with my healthcare system is that the ONC has to get approval from my province. If she just continues Herceptin without getting clearance from the government, it could jeapordize me getting it later. If Herceptin is not an option, she will scan me every 3 months instead. Personally, I hope we can continure Herceptin, I have great echoes and no real SE other than joint pain besides it keeping NED below the head. I also get it about energy, amazing how tired I am after surgery/rads. Will probably sleep a ton once off the steroids.
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Hello, everyone--has anyone heard from Kicks lately? I've been missing her around here.
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Searching BCO I can see that Kicks last posted three months ago on 22 June. Last post on this thread was 2 June. Chime in if you're around Kicks.
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Mara I am hoping your feeling better off steroid. I really didn't like them either. Couldn't sleep and by the time I surrendered and got up, I was through with them.Just part of this process. I hope we discover a way to detect this particular cancer before it's so advanced (stage 3 or 4). Your spirit sure sounds intact and that's great.
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No worries, jc. How did the scope go?
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The scope was good but I noticed my right nipple was pink and out of focus and it's very warm. I saw my primary agree day later. She order a mammo. It doesn't seem to be spreading.We will see. How are you doing Meadow?
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jc, I am good, I am substitute teaching again, trying to save money for a lil camper we are getting restored. We haven't camped in many years, now that the grandkids are bigger we think this would be fun.....am I right, will this be fun? Any campers out there?
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Meadow that's a fantastic move, happy saving and happy camping, it certainly has to be fun. And there's lots of campers around here, I'm sure.
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Yes Meadow it's fun. You will love it. Plus campgrounds if you choose are almost like upscale resorts with the amenities. What i like is you can go rustic, or have a campsight in a rustic area but have clubhouses with great amenities.
I regret getting rid of our travel trailer once the kids left home. DH and I are looking at a small driving camper. That way we can pull a small car and park our 'house' for the week.
Keep us posted on it.
Glad to see everyone is doing ok. I'm getting along. So angry sometimes about having a stroke, but as my MO said a week, ago, so glad a tumor did not cause the pressure in my brain. Gotta be thankful for life, and go forward.
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Valstim. Have to admit I'm more of a glamper than a camper these days, and you've noted how the camping options have changed. Just loved your spot-on comment: Gotta be thankful for life, and go forward. Cheers to that.
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