Can we have a forum for "older" people with bc?
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My son Ryan, 31, went into a behavioral treatment center yesterday afternoon. He needs to go through alcohol detox and then begin treatment for severe suicidal depression. His doctor, whom he adores, drove to our house, picked Ryan up, and stayed with him through the admission process. The man is fabulous! How many doctors would do this? He's been Ryan's primary care doc for 10 years and always goes above and beyond for my son.
Ryan was supposed to take care of the house - cats, mail, plants - for a month or so while we are in Houston for Mike's leukemia treatment at MD Anderson Cancer Center. He only lasted 6 days. He is so afraid that his dad will die here and he'll never see him again. The last few days he's had numerous phone calls with Dr. Bromley. I'm so thankful. Otherwise Ryan may have given up. I nominate James Bromley, M.D. for Man of the Year!
A friend who has a key to our house has stepped up to take care of the two cats. Ryan will probably be at Laurel Ridge for a week or more while he detoxes from alcohol. Afterwards I hope they will accept him into their outpatient program where he can spend each day there in various group therapy environments, but come home each evening.
I feel guilty about not being there for my son but he is 4 hours away and Mike is so weak now, he cannot be alone. Sometimes he doesn't have the energy to stand by himself. Tomorrow we see the doctor for the third time. Hopefully all the detailed molecular studies are back and have identified what subgroup of AML Mike has. MD Anderson has identified several experimental chemo combinations to target a few of the subgroups. I do know that he doesn't have the FLT3 subgroup, which is a huge relief because that one has little hope.
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Jackie, your optimism and philosophy of life is such a fresh breath! Those curves do seem to make us appreciate life through a different set of eyes. I love seeing the sun here during summer, but the heat here becomes oppressive and lasts through about October. Since I'm most likely heading into rads now, not looking forward to the heat at the same time. But I'll try to adopt your outlook just be very appreciative of the little things that are the very best! Enjoy your summer also. Dara
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Saying many prayers and sending endless hope, positive energies and anything else good that I can Sandra. I put you, Mike and Ryan all in the same category along with your daughters.
Much love
Jackie
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Sandra, sending strong thoughts to you and all your family. You have so much on your plate right now. Don't forget to take care of yourself as well. Gentle hugs to you! Dara
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Sandra, Mike and Ryan,
I have been reading but never posted here. Just wanted you to know that my heart goes out to you and that my prayers are with you and your family. Thank God for your sons doctor, close friends and to those that you can turn to in this forum. Take care.
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Sandra, Sending hugs and good wishes for your entire family.
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Thank you, friends. I can't share much with Mike...he gets too depressed...so I'm glad I have all of you.
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Sandra, Thinking of you and the load you bear. May you continue to have strength.
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"Adversity is another way to measure the greatness of individuals. I never had a crisis that didn't make me stronger." ~ Lou Holtz
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9 of us from Audubon went to Riding Mountain National Park in Canada Thursday, birded the park Friday and Saturday, spent some time at the Peace Gardens, and checked out shorebirds on the way home Sunday. Had a great trip, even saw 2 bear. One of the bears was in grass fairly close to the road and stood up on his hind legs twice to look at us. Really wished my cell phone had been handy to take a photo, we didn't have cell phone coverage in Canada so it was buried in my purse.
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Glad you got to see some birds Puffin and just wow --- the bonus. Not sure how I would have felt, but I'm sure you were safe. It is a shame to have missed a picture of something sort of large and hairy when likely most of your pics are of something small with feathers.
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(((Sandra, Mike & Ryan))). Hoping this is Ryan’s turnaround and that the oncs at MDA can at least slam the brakes on Mike’s leukemia.
Mausie, have you had upper endoscopy to rule out a GI bleed? That was the cause of my unexplained anemia: a mini-ulcer of “probable chemical origin" (most likely all the NSAIDs I’d taken first for OA and then to manage my pain recovering from knee replacement surgery).
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Just a quick FYI, I got my Prosigna test results today, and was shocked to find I'm in the high risk category. I'd really convinced myself that I'd at least be intermediate or low risk, but that wasn't the case. Will need to start chemo next Monday, 4 cycles, 3weeks apart and following each cycle, and injection of Neulasta. Really bummed :-(
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Dara, Sorry to hear your bad news. I know you were ready to just put it behind you and chemo will delay that. Hugs.
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Dara, what a shock for you. I know you will process this in your own time and come to grips with it, but for now of course you are upset.
Puffin, what a thrill to see the bears! You will always have that memory, even if there is no photo to prove it to others.
Although today has been one hell of a long day, it had some good news. All the molecular tests were back so the doctor at MD Anderson could finally decide if there was anything they could do for Mike. Yes!! Turns out he has a mutation called IDH2. Lucky for him, it's one of several that the Leukemia Center has a targeted therapy for. It's an experimental chemo called AG-211 that has shown some effectiveness for his subgroup of Acute Myeloid Leukemia. Mike was accepted into a clinical trial today. They are investigating the effectiveness of this new chemo combined with a standard rescue chemo protocol. It's a Phase I trial, which had me worried because that usually means a drug has just passed the tests with the rats and moved on to humans. But the AG-211 when used alone has shown promise and the standard chemo is not experimental. They just want to see if combining them will be even better. He will go into the hospital on Thursday for a month in a protective environment. That means I'll be waving to him from behind glass, which will be difficult for us both. But it's for his own protection. The drugs are harsh and he is guaranteed to be quite sick for most of the month. He could die from a drug reaction, a side effect, or an infection so they must keep him safe behind glass. The doctor said his particular type of AML is extremely aggressive and that's why it was able to break through the new immune system after the transplant and cause the failure. The prognosis is poor but it's a chance, at least, and we're happy to have it.
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Sandra, glad to see that Anderson gave you some encouraging news!
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Hi all,
Dara, so sorry you have to have chemo after thinking you wouldn't. It must feel almost like getting the DX all over again.Good news is it will be finished before the holidays. I know needing chemo is never good, but there are so many worse things.
Sandra- so glad they have something that might help Mike. Here's hoping it will work perfectly. Only being able to see him through a window must be very hard and lonely for both of you.
My brother seems to be doing ok in Hospice. He has days where he won't eat and days when he sleeps most of the day, but when my sister visited him Sun, and he found out her daughter and 2 grandsons had driven her there and we're waiting outside, he asked them to come in, and had a good time with the boys (7 & 4). His wife had to go to the emergency room one night last week for another transfusion. My younger brother and I have decided to go up around Aug 20th, which will overlap our nephew and his family for a few days. They live in Germany and I haven't seen him for about 15 years and have never met his wife or kids. Our original plAns were to go up as soon as he left, but decided we both want to reconnect with him while we can. We have also decided that if they don't want my brother to know we are there yet, we will wait till the son leaves before seeing him. His wife was the one who said my brother knew we were coming up after theirs sons visit and didn't want to scare Bill by us turning up earlier, but wanting to see his son and grandsons seems like a perfect reason to come a little earlier.
Other than that, I am keeping busy, school shopping for school clothes with my 2 oldest grandchildren. They go back Mon, but the kids in Fl have an extra week, which will give me time for them when I get back next week. I am really looking forward to shopping with Victoria. She is going in to middle school and no longer needs to wear uniforms.
Anne
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You may not have saved a lot of money in your life, but if you have saved a lot of heartaches for other folks, you are a pretty rich person.
Seth Parker0 -
Sandra - Wonderful news that there is something to try!!! Once he gets started, you'll have lots of sitting around time. Please call me and I'll come take you to lunch to give you a break. I'm still in PT two mornings a week for my broken arm, but we can work around that. Funny, I thought we'd meet in San Antonio first at one of your book stores, but I am looking forward to meeting you.
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Sandra: wonderful news that Mike qualifies for a clinical trial.
Dara: same thing happened to me, totally blindsided me that I'd be having chemo, was getting ready for radiation after my lumpectomy and then my oncotype score came back and I was looking at 4 rounds of chemo and neulasta instead. Are you going to be getting a port? Even though it was only 4 cycles, I really liked having my port for all the lab draws too. After the lumpectomy I'm limited to just using the veins in my other arm, I didn't want to risk messing up those few veins. Be sure and ask if you'll be getting a chemo class, mine was only an hour long but they gave us a 3 ring binder of excellent info in what to do to prevent side effects and how to deal with those that do. Also, I highly recommend recording all your Dr visits (like with your smart phone) as so much is covered so fast, it's helpful to be able to relisten later at home.If you're going to get a wig do that soon while you still have your own hair and they can help you match style and color better. The American Cancer Society will provide one free wig. Also, check out the chemo forums here on breastcancer.org. There are some excellent ones. A new forum is usually started each month for those starting chemo, like "August 2016 chemo". There were about 30 women in my July 2014 group and we became very close - they were an immense help, we still stay in touch after 2 years. You can do this, but remember that knowledge is power.0 -
True humility is intelligent self-respect which keeps us from thinking too highly or meanly of ourselves.It makes us mindful of the nobility God meant us to have.Yet it makes us modest by reminding us how far we have come short of what we can be. -Ralph W. Sockman
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Thanks, Puffin. My MO said to try no port/picc line first. I'm skeptical since like you, I have to use my right arm only, and the last blood draw created two huge bruises the minute she put the needle in and it took 2 weeks for the bruise to go away. We'll see how Monday goes. MO said the can just call down if they have trouble and he can order the port etc. Has anyone else not used a port? I did join the Aug 16 chemo thread. I had been dropping in on the July one, but worried as several seemed overwhelming. It may have just been my own insecurities. I had already bought a wig with a friend before surgery, so at least I have that. How does American Cancer Soc pay for one? Do they need a prescription from the MO? It's quite hot here and we're heading into some of our hottest weather, so I think I may wind up with scarves much of the time. I will be taking the same chemo as you did. Thanks to everyone for advice and support!
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Hello from north MN. I arrived back in MN last Tues. and already a week has whizzed by. The weather presented a wonderful contrast the first 4 or 5 days. Now it's somewhat muggier and warmer but nothing like Louisiana. For those of you who have not experienced summer in the south, walking outside is like being hit by hot bricks.
Sandra, I hope the experimental treatment at Anderson turns the situation around for Mike.
Dara, good luck with your treatment.
DH and I went out on the lake fishing this morning. It was lovely with a gentle breeze. I caught a pretty "sunny" and a small crappie. It's just as well I didn't catch more because the pump that operates the live well wasn't working which also meant the bilge pump wasn't working either. DH recently installed a new depth sounder and might have messed up some wiring. Now he has to do some trouble shooting and find out the problem. As Rosanna Dana said, It's always SOMETHING. These are minor irritations, nothing to grumble about.
Anne, that's so nice that you'll be teaching your DGS to cook. I love the idea of the two of you spending that special time together.
Best wishes to everyone, including Chevy and all those who haven't checked in for a while.
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Thinking of all of you. Anne, you are such a good grandma to the young ones. What fun they will have making memories with you.
Dara, I too am sorry that chemo has to be in your future. None of us actually welcomed it, but you do what you must to keep enjoying a bountiful world. The good part for me was ( though I admit it turned out to be much harder than I thought ) that I was helping those who KNEW what to do to save my life. The second was that in comparison it was a very small amt. of time for me to get a productive life back. That made it more than a fair trade to me. These things I planted in my mind just in case I needed to think about it in ways that would help me keep going as strong as I could through it.
I did have 6 mos. of chemo -- Two different kinds mixed together for the first four rounds, and then a single kind for the last four rounds. I also spent the next 7 days after each of my 8 chemo infusions giving myself Neupogin injections for my blood cells to regenerate quickly. I wasn't thrilled but I would gladly do it all over if need be.
Carole, it is great to hear from you. Glad you are enjoying the nice MN weather. We are having our second major pout-down today. It will likely bring on hotter more humid weather in the next couple of days. We have actually had a fair amt. of rain this season so still have good laws ( for now ) and hopefully will continue to keep them for a bit. On the other hand, squirrels have started eating nuts out of our nut trees so the driveway is littered with shells, little pieces of nuts, and lots of ones that have fallen to the ground whole. That is a sure sign of August here.......we generally have to pull onto the grass somewhere and stay off the drive-way for the most part till most of the stuff is down.
I'm still enjoying my car and thankful to have it. Hasn't been long enough since I got it either not to giggle a little over the fact of having 'hated' the first Equinox's so much that I no longer even bothered to look at them and certainly never expected to have one of those 'ugly' things. I guess I'm lucky they changed the body style behind my back so I would have something to afford and turn out happy with after all.
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When we ordered our rental car to pick up at the Pisa airport, the only automatic the site had with both A/C and a 3-suitcase capacity was a little Fiat 500L. I'd seen them around Rome and thought they were adorable--even looked forward to the small gas tank/ high fuel economy and relative ease of parking. Imagine my surprise when we landed and found ourselves in an Opel Insignia--as big as my Outback! But I quickly grew to like it (except for its inexplicable lack of a backup camera, and the nav. system having been left programmed to Finnish after the previous renter--the exit gate agent helped me reset it to English, though I'd have accepted Italian too). Amazingly, it had the same fuel economy as the Fiat--though a much larger gas tank, of which we used less than half (we pre-purchased fuel). I found out it'll be released in the U.S. this fall as the Buick Regal Sport Wagon.
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Carole, When you mentioned the hot bricks, I thought "she left out the humidity". Then had a flashback to visiting New Orleans with my parents when I was a teen. Starched crinolines were popular and girls would dip them in starch and stand them up on the grass to dry. I remember the starch in those things melting and having sticky limp things sticking to my legs. Yuck.
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We don't always know whose lives we touched and made better for having cared, because actions can sometimes have un-seen ramifications. What's important is that you do care and you do act.
Charlotte Lunsford
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Ahh summer is in full season here...the sun is hot, the breezes cool it down, and the ocean is warm.
Work starts in a week and a half. I was feeling awful about it, but I have had a good week and realize I am enjoying each day. No plans necessary....just go with it.
DH and I may take a short road trip. We did not do our usual trip this summer to California to see our son, and I am realizing that life changes, especially for the younger ones, and I will adapt.Sandra, I am glad that Mike was accepted in the trial. It offers hope. Sorry you will be separated physically for awhile. I pray it goes well. And prayers for your son-- I guess there is a reason that he is on his own at this time. What a wonderful doctor you have, to be there for Ryan.
Dara, it must be such a shock to receive the information that your risk is higher than you thought it might be. Nobody wants chemo. Many of the ladies on BCO have done it, put it behind them and moved on with living. I believe you will too. Sending hugs and prayers for you at this time.
Anne, I agree...you are an amazing grandma among all the other things you do for others. It must be hard to see those you love facing such trials.
Chi Sandy, safe travels for you!
I need a little more outdoor time today before the sun goes down.
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Well, considering we make up the largest percentage of breast cancer people, we certainly should have a spot just for us. I can't read all the posts because there are so many. But hi everyone! I'm 65. Had cancer at 51, 62, and 64. What fun.
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Welcome Vatz! This is a small but friendly group of the most supportive women you have ever met. I've been here since 2013 and even though my last surgery was in December 2014, I still come to see what my friends are up to. We don't always talk about medical issues...sometimes we discuss gardening, cooking, hobbies, family, travel, etc.
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