My Husband, My Life, My Love, My Family, My Cancer
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SunSet- Well, something is driving the bus! Perhaps its time for an immuno combo, then?!
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Curious. I've been on faslodex twice, multiple anti hormonal, and this is my third chemo...my ONC doesn't think immuno will help my garden variety Er, Pr. Her2 nue cancer. Hopefully I can hang on long enough to find something that works. He was hoping for apselibib (?) but I don't have that mutation. He said maybe navelbine next or back to taxotere, which I was on 8 years ago, but he is also thinking if we don't Shrink everything in the liver, he wouldn't like to to try Y 90. I'm not so sure about that myself. If I can't be treated systemically, not sure of the point. My bone Mets are minimal and are not his focus at the moment. Thanks for all of your insight.
Sunset
Wanted to add...all of my therapies have been adjuvent.
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So, we came to the dells for the indoor water park and downtown sight seeing but found a cosplay/gamer convention happening in another part of the hotel. This is where a girl had a litt booth set up for henna tattoos I wanted the wrist & finger design but also a sea turtle, so she combined them. It was only $20, the henna and glitter already feel off and the ink will darken over the next few days, then fade away in a week or two. I’m enjoying it while it lasts.
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Curious~Waving hello to you. Always helping others understand the crap we all are forced to deal with. I am naive sometimes and think that they should be able to find a cure, they can’t be that far off. Hepatitis strains have a cure now. HIV has comes leaps and bounds. I am praying at least if I don’t see it. My daughter and her children may. I can only hope. Like I said many time I struggle with my faith. Evil cancer !
A beautifulset~I hope you had a peaceful evening to go with your day. I feel happy to have gotten my dad outside. I will take the little things ...
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Abeautifulsunset. There are some systematic meds you can take simultaneously while you are having y90. I stayed on I/L the whole time. In fact, if my new MO puts me on X I will probably have another y90 while I'm on it. My scans are in a week, scanxiety.
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The henna has now dried, peeled off and left the ink behind. Here’s what it looks like now. 😀
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Waving hello to Grannax!!!!
Mae~Still loving it. How long did it take for the henna to dry off? Did it itch. ? I would love to get one myself. I’m going to google my area. Thanks for showing us a different kind of beauty. Parry & Mae!
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Today was a good day. No nap. But I had two friends from high school come to visit. One is my BFF and had been since I was 12years old. We are like family. She helps me in so many ways. She visits every month twice. Brings me things. Today she brought me a huge 72 count tide pod detergent and my fabric softener in bulk was delivered this week also. Two huge bottles . Thoughtful person. Always was. Huge heart. The other one was from our circle as teenagers. It was so much fun. We laughed and cried. Ate dinner together. It was special. A night to hold onto. I hope to have many more of those. Hope everyone’s ok !0
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Hi friends, I’ve been reading along with you for a couple of months. I wanted to share with you a couple of photos from Mission San Juan Capistrano. I spent a gorgeous day there today and learned that Saint Peregrine is the saint of cancer and the people who experience it. I’m not a religious person but I did hold some thoughtful words and lit a candle for all of us in BCO today.
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Jen~Welcome to our thread... I am thrilled to see you here. I remember seeing you on ibrance thread and I hope you're still kicking some major ass on it. I love having you here and I hope that you will stop in and become part of the family. Sendng you much love and and hugs. I love what you posted. I am not overally religious either. But there is something about seeing the saint of cancer. Idpray to him anyway. Just to take it away for us all! Hugs beautiful lady. Again welcome 🥰🌹
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Hi all! Been reading but haven’t posted much. I think of you all every day. Gonna try to cst h up. Parry, I hope things are improving for you, you really need a good break. Gum doctor, I love your plants. Just looking at plants and flowers reduce anxiety for me. We have a lot outside in the summer but can’t have them inside because my cat loves to chew on them. Tanya, you have such a beautiful close family. I also try to go outside every day, even to just sit on my deck for a few minutes. My husband brought out the summer deck furniture for me even though it’s 38 here today ( was 78 on Saturday). Donnabelle, love the socks. Not to offend someone but I told my family( kids are grown) that motherfucker is the word of the year for 2019. When we are together and something happens we all yell morherfucker.. only in private and we have had many laughs over this. My kids never knew their mom could say such words! Grannax, I loved seeing you together with your family and hope things are improving. Good luck in your meeting. Philly, my friend is a Zumba teacher, former nurse like me. She also does chair Zumba for seniors and people with physical challenges. It’s quite a workout! Lots of fun too! Mae, loved your henna tattoo. They are so intricate and beautiful. Sunset, what do you hydrate with, dextrose, saline?? Just curious. Divine, hope Ibrance is treating you well. I’m 4 years on it, my onc says her longest patient. My onc FINALLY got approval for my pet scan. Scan day is Wednesday morning. Asking for you all to jump in my pockets. I’m really scared this time, been on the verge of tears all weekend and had some fall. I have some Xanax for the scan, might take some today or tomorrow. My husband is taking the day off to take me. Usually go alone but the nerves are too bad this time. Please forgive me if I forgot anyone, I’m not as good at this as our friend Micmel. Micmel hope you’re hanging in there, stay warm!!0
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hi everybody! Lynnwood I am with you and we are all with you during your upcoming scan. your anxiety around the sca makes perfect sense. Hang in there, try to do something fun and good for yourself during these next few days. And take that Xanax if you need to. This is the perfect time to take an anti anxiety. I always fought myself to take these meds, like I felt as if I needed to be brave and strong...the Anxiety can be crippling. As soon as I would give in to taking the anti-anxiety medication and would allow the 20 minutes or so it would take to start kicking in, I would feel so much better that I would be sort of mad at myself for not having taken it sooner. Please don’t hesitate to take it as you need it to get through this time.
I am wishing everyone love and hugs.
Tanya, what a gorgeous family you have such beautiful children. They look so sweet. Thank you for sharing your photos.
Mae, I love your henna tattoo it’s beautiful!
Last night I went on a third date with a man that has been very sweet to me. He’s a bit older and so sometimes I feel a little bit weird about the age difference. But he’s so handsome and so positive that I feel like I can work with it. He’s also a gentleman, very old-school. And to top it off, he’s my fitness coach at the gym. So he is in very good shape 😉 We went to see a tap dancing performance and it was so good. It was nice to have some physical affection and attention and to feel loved and desired. I am moving slowly with him, but I am also happy Because he knows about my diagnosis and he realizes that life is precious, and that we have to be grateful for each and every day and each and every moment.
I will keep you all updated on this budding romance.
With love,
Philly0 -
Jen, thank you for St Peregrine. I had no idea there was a saint for people with cancer. I'm going to read more about that. Thank you form lighting a candle and for your positive and directed thoughts.
Lynwood, yep, I'm in your pocket for the scan. I will *try* to behave.
Philly, yay for a budding romance.
Waving to everyone. I wish I were better at naming you all.
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Lynnewood, I will be in your pocket on Wednesday. You may hear a loud voice yelling “motherfucker!" Sometimes swearing is just so appropriate!
Hello everyone. Today was my husbands first official day of retirement. We ran some errands and went to sit at the beach and watch the surfers. It was just perfect although I couldn't take a very long walk. Getting platelets on Wednesday and i know that is not supposed to help with energy, but I swear it did help last time I got them.
Jen, I have been to that mission. I love the history we have here in CA, and the missions are such an integral part. I am not as religious as I once was, but I'm thinking maybe I need to wear a St. Peregrine medal. Can't hurt and it might help.
Donna
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philly- it’s great to hear about you and this gentleman it makes things a little better knowing that there is life to be lived.
mae- love the henna! my daughter and her friend got one at the beach the first day we were there( i warned them not to) needless to say it was a waste of money. they smeared it sooo bad.
yay!! lynwood very encouraging about the inbrance. i will be with the rest of the crew in your pocket. why do you think you are more worried this time? have you felt something new?
micmel- it was great that your friends were able to come over. a delightful distraction
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Hello ladies ~ word of the day. Mother fucker ? Sounds ok to me. I've met one or two for sure!
Jumping into Lynnwood's pocket. Bringing the cupcakes and sweets because I am never giving them up. Ever!! I do not have as many months under my belt like you do with ibrance. My oncologist is thrilled also. I'm starting 29 month. He calls me tank. He said he has high hopes that I will be a story like you. I am soooo much in your pocket. I may not come out.
Donna~Hello beautiful, only been to CA one time and only in LAX for a transfer to Hawaii. I really would love to see the sights for sure. So much to see. So little time, so much limitation. A DH who does nothing but take care of people and drives all over the place. I'm wearing myself with my father. But I see it in his eyes. He knows. I am with him the most. I truly am. This has been so good for me. My heart is happy again, I have my father back. I was hugging him, when I had him in the wheel chair. I was blocking the wind and keeping him warm with the blanket and my body heat. He leaned his head on my arm and it was a sweet sweet moment. One I will forever remember. As tears rush my eyes for sure. I just want him to Know I love him. Because I do, I always have. I had to harden myself as well for my step Mother. That one will not be a transition into anything other than. For my Dad. I know she's sorry. I can tell, she is relying on me. She came to me personally and asked me to be her partner with taking Care of Dad. Said no one else in my dis functional family can handle it. Even with my MBC. I am still reliable and I keep my word. If I can't be there. I dispatch people who can. She realizes if I didn't get involved when I did. Who knows what would have happened. That's my gift from someone above , that chance to make my heart realize it wasn't me. I did nothing wrong. Umm not perfect in any way! I have just learned to own my shit!! If you see the cancer saint. Light some candles of hope for us all. 🕯 .....not to mention congrats 🍾🎉 for DH retirement!!! I would love to stick my toes in the sand!
Ichangedmyname~I am smiling about your budding romance comment. This is why I live. My sweet (older) DH. I always thought older men seem to understand life more than younger ones. They have lived more and realized that beauty is the entire person and package. My older man kisses my scars. I agree with taking your time. You deserve to be sure that is your person. You're worth it. Seems like a nice man. Especially happy that you have such strength to stand on your beautiful own and say hey this is who I am ! A beawonderful woman, but one won't settle. Sounds like such a good start. I am pulling for you guys. Love makes my world go around , but there are a few good men left out there. Hugs to you my friend !!! Love having you here, another Philly girl! 😄
Where is Minnie?????🥺🥺🥺
Muddling~No worries about mentioning everything. Just having you here is all we need. Family doesn't always have to speak every second you know ? We just have your back as sisters at your other home here .
Mae~ how is henna now? Hi Tanya.. love your family
Holmes~Hi honey ~ I did have a great day with my friends! My bff I've known since I've been 12 years old , she moved in next door to the only home I've ever known. So all through middle school and all high school. Forever it seems. The other friend I met in middle school and we have always been fine, I enjoy her company. When she walked in, I think she was expecting an emaitiated patient with a pole and tubing. My hair was longer than hers. And she was shocked at how well I looked and how strong I was. That is the problem with MBC, people alwaysthinking we are ok . Not many people even know what the damn disease even is. I hate cancer. But I love you ladies !
Hugs to all ! Gracie~~~~ Still waiting
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Philly, that is wonderful. You seem happy.
Lynwood, in your pocket, as well.crowded in there. In a good way.
Went tubing in the snow park today. Sure I threw up for 20 minutes when I got home, but damn that was fun!!
I'm really really bad at mentioning everyone, but I'm always following.
ABSunset
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Whoo, this thread moves too quickly for me!
Jen, I am headed to Santa Barbara this weekend, will add the mission to my must-see list!
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Sunset,
This is a problem for all of us, for most of us our oncologists do not know what is shaking for immunotherapy treatments- so we are often on our own if we want to give it a try..
Note that Kattysmith just posted another killer scan, on an immunotherapy regimen!! She is ER-positive, HER2-neg, and is in a trial at MD Anderson that combines Keytruda with EP4 inhibitor. The EP4 part is designed to make cancers that don't normally respond to immunotherapy become sensitive to the drug. Tumors shrunk 37% already. Not much side effects, since EP4 is an NSAID that helps with osteoarthritis pain/inflammation.
https://community.breastcancer.org/forum/8/topics/...
Here is a link to the trial she is on. Open to all who have run through the standard treatments:
https://clinicaltrials.gov/ct2/show/study/NCT03661...
And then also you could consider the Alisertib trial, which is having great success and we have the two Anne's trying it out. It is phase 2. https://clinicaltrials.gov/ct2/show/NCT02860000
you might have too many prior chemos for the Alisertib trial, but its worth checking it out if you are interested, because doctors can talk to these guys and get their patients into trials, plus if they want to improve accrual sometimes they find a way around this stuff. And if not, if its anything great, it will go quickly through the trials. For Ibrance, they did not wait for phase 3 to finish- I remember reading the FDA approved it once they had complete accrual for phase 3, thereby assuring that they would have collected the data they needed. Once phase 3 recruitment was full, the made the drug available to all-
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cure-ious~I cant imagine the ibrance thread isn’t a cruising machine. Having you and your knowledge here is an honest pleasure. Say a sweet prayer at the saint. Hopefully, there will be a cure soon. Just like your name!Hugs to you sweet lady!
~M~
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hello all, landed around 7pm, now home, fed and ready for my bed. The trip was lots of fun and the concert was awesome, both bands really rocked the house.
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Hi, I am trying to catch up after our trip. Lots of sleep after 30 hours travel to get home.
Love to all until I read up x
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a beautiful sunset~ no worries. About mentioning everyone, we all know who the family consists of!!! Sometimes it’s even hard for me to. Remember everything.
I knew Minnie was traveling l, but didn’t remember for how long, and Mae who is always putting me in awe of all the things she does. All of the time. While I am just waiting to be able to go back to bed. The traveling amazes me. I just wish this one met would vamoose, that is on my end plate of My spine! Ouchie after a while of constant movement !
Some great pics Mae...... as always you amaze me!! Lynne (50’s)~you alright beauty? Parry~ you too darling.
Much love to all!
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Saw My Dad today spent three hours with him. They put him in the wheel chair for me, and I got him all dressed up and ready to go out for his walk. He's loving being out in the fresh air, I know it sounds weird. Considering he is smoking.... but I think being out of bed. He is loving it. We spent some good time together. It was lovely outside. He just is so happy to have his drink and smoke his cigarettes ! It makes me feel good to take him. My sister and my niece came up to visit him as well. I asked him if he wanted to go with all of us and he said no. You take me. So we sat together and talked. It was a nice day. Now it's naptime. Hope everyone is well. Hopping into pockets with lots of snacks. Hugs and hope! ~M~
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Hi all -
This A/C is kicking my butt, but I am trying to stick to my schedule of a (short) walk each day. Then it is home to rest.
Love the spirit on this board! Sunset, trading 20 minutes of vomiting for tubing in the snow....fantastic. Ichangedmynam starting a new romance! Go girl! All of our travelers. Cure-ious, DH and I were in Santa Barbara last weekend and took the time to go to the mission. Well worth it. And Mae, can't keep you in one place for long, good for you. Minnie, I hope you rest and recoup after a wonderful trip. DH and I are headed to Washington DC next Wednesday, then up to Boston for a Red Sox game. I'm very excited and hopeful for just a little more energy for the trip. Since I may have no hair, I ordered myself a nice Red Sox du rag, lol.
Micmel, I think it is high time you took a break and got on the road to CA. Us west coasters would welcome you extravagantly! So much to see and do, you would love it! Maybe when things settle down and get easier, you should give yourself a reward, just sayin'.
Grannax, hope things are going well with the family
Love to all,
Donna
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Cure-ious, I live within a block of the Mission! The weather has been heavenly this week. If you want to grab a nice bite near the Mission. the El Encanto Hotel is nearby, and the patio has a great view of the ocean.
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Such happy days when Papa gets to take his little granddaughter to kindergarten!
Mae, looks like you rocked the house!
Still reading up xx
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SantaBarb- thankyouthankyou!! I am picking up a close friend from grad school at the airport and we will be up there on Friday! We have tix for LotusLand on Friday afternoon, and then want to eat at the wharf seafood bar that has linguini and clams and great beer, then to McConnells for homemade ice-cream, state street for shopping and buy some Chocolates Calebrissan truffles , on Sunday go to Summerland Inn for brunch and Roxanne's for quilting fabrics, hit the orchid growers over by the coast, eat at Jane's or the great mexican food place (Los Agavos?) and now we need fit in the mission plus your hotel!! If you see two women walking around real fast and talking nonstop that's just us. Head back Monday morning- I wonder if the monarchs are in the butterfly grove this time of year?
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Very fitting for us here, Micmel. I feel some urgency to spend my time better than before, but I have no idea what exactly that looks like. As far as I have figured out, it means spending more time with the good people in my life. Hubby and I have been in FL visiting with his siblings for a few days and it’s been nice to be together with them. I was able to retire a couple years ago and the freedom of not going to work is even sweeter now that my years are not a given. I probably would have done it now if I hadn’t already, even if wasn’t the perfect time financially.
I’m glad you’ve had some special times with your dad lately. You’ll have some nice memories to look back on. And you’ll know you made him happy with some simple pleasures like sun on his face, the elusive cigarette and drink, and some special moments with you. It sounds like you’re in a good place with him now, and you deserve that.
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