Bone Mets Thread
Comments
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Lita, what's the name of that hotel? We may have stayed there for my son's wedding. It was a similar style and very artsy. Love SF. My son and family have been there about 7 years (dial is from that area). Hope I can get strong enough to visit again soon!!
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howdy gals,
You were there for me in my panicked time of need. Words can't express how you helped me see some sunshine in all the gloom. Thank you. I was diagnosed St. Patrick's day. Have had 10 Rads to pelvis, 8 to T3, (will finish up rads on Tuesday), Lupron shot 2 weeks ago, will start Kisqali and femara on Wednesday after the pharmacist gives me an "education class". Xgeva shots will start in one month. Also taking Aleve and Xanax. I feel good about this plan, my 2nd opinion at IU Simon and 3rd opinion at MD Anderson were In agreement. MDA offered a clinical trial (radium 223), but I didn't feel comfortable with it. I'm worn out by the dr visits....want to explore SSDI maybe this summer, but would sure like to teach as long as Possible
I started using a motorized wheelchair at my school because of my right hip pain this week, which gave me more energy in the evenings with my family. Friday, I felt great, like everything will slowly heal and I will get my walking independence back. Saturday morning found me in pain with my other hip now! I'm hobbling around the house with a cane the whole weekend. I'm sorry for the drama saga. It just sucks,,,
My daughters confirmation is next Saturday, hoping for better mobility by then.
Wishing you all a blessed Sunday. ❤️Tessa
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Louis, Lifting you and KD up in prayer. I know this is hard for both of you to go through. I also know that you are surrounded by many people in the hospital who are focused on taking care of your wife. Do not neglect yourself. You need to stay healthy and strong to get through this, too. It is too easy for a caregiver like yourself to worry and concentrate so much on their loved one that they forget to take care of themselves. I hope that your wife improves quickly. As I said previously, it can take a long time to fully recover from sepsis, so stay strong.
Tessa, You have been through a lot in a relatively short period of time. Give yourself time to heal before you make a final decision about continuing to work. My understanding is that it takes time to recover from rads. You are the first person I know whose treatment plan includes Kisqali. Woohoo! I am anxious to hear all about it. First of all, how do you pronounce it? Lol. It did very well in clinical trials, as I am sure you know. I hope it treats you well.
Lynne
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Louis, you and your princess are in my thoughts.
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Babs, Those wedding photos are wonderful. Your daughter looks beautiful and so happy. Will she be living in France or in the U.S? You have probably already told us, but I can't recall.
Kaption, I hope you get good news on your scans tomorrow.
It seems as if there are a lot of people on this thread who are getting scans now. It is hard to keep up. I am not due to get them until June, but my DH is getting a CT scan and MRI tomorrow, and hopefully, there will be no recurrence of his kidney cancer. I get more nervous about his scans than about my own.
Lita, it looks and sounds like you had a good time in San Francisco. How long were you there?
Rachel, You and your family look beautiful, as always. As you know, I always look forward to you photo posts. I am so happy that you have been busy living life. I hope you continue to do that for a very long time.
Wendy, You look great with short hair, but quite frankly, you always look beautiful. I hope things turn around for you soon so you start to feel better. I also hope that those cancer cells are choking and puking and dropping dead from that powerful Taxol.
Hugs and prayers to all,
Lynne
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Louis, my prayers for you and kd. So important to take care off you too! We can't emphasize that enough! I don't know where I would be without my so.
Tho everyone else, hugs and prayers!
C
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Lynne. Originally they talked about living in Paris but he's in NY now and is meeting with people to see about living here!!!! I just want them to be happy wherever they decide!! We saw them Friday night on their way out with friends and they're coming to us for dinner later. He's a real family man which I love.
I'm really feeling lucky. I think he made this decision due to me. He knows how close my dd and I are and how she worries about me!!!!
Bab
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Babs, Your new wil sounds sweet and thoughtful. It would be wonderful for you if they were able to stay in the area.
Lynne
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Lita~ there you go again looking all fine in your sun hat!! So jealous! I my friend, am no hat person. I am not sure if my head is oddly shaped or if it's just a small head! Lol you are an inspiration and I love seeing you out and about in lovely SF!! Love the art! Hope you had a blast. Now you can start planning that trip you've been talking about !! Hugs and prayers ~M~ Hello to DH &Sofia!
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Tessio - I agree you have a great plan. I am proud of you for taking the wheelchair ... I become very concerned when people report pain. It gets us out of the game mentally and that is when things go downhill. Working holds many people together and if going to school and teaching keeps you going, do it. I am glad you have the summer coming to rest and evaluate the effects of this regime, but things will likely be very much improved in the fall.
Babs - I feel strongly that this wonderful marriage will be game changing for your health. To see your daughter strong and happy will lift your spirits through all the challenge and this can be the difference between making and not. I love hearing your story ... thanks for sharing.
Wendy - I agree with Lynne. I know the cancer is dying but I want it to be a horrible death. I want them to puke themselves to death. I am quite angry about that crap coming back and putting you through this. How are you doing?
>Z<
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KAPTION, the hotels name is Hotel del Sol on Webster St., northwest of the financial district in SF.
50sgirl, we only live about 45 mins southeast of SF, on the other side of the bay, but it usually takes about an hour or more to get there with traffic. We were only up there for the afternoon. Traffic was horrible tho, even for a Saturday.
TESSA, use the cane and wheelchair as long as you need to. When I was first dx'd last year, I used EVERYTHING, wheelchair, walker and canes. Whatever you have to do to make life easier...don't be embarrassed about it. As far as working or not working, we have state disability to tap into first in CA. It's temporary, and actually pays more than SSDI, but its not permanent disability. You can go on and go off it. Some women prefer to work, others like me would die if they had to continue working. My pain, fatigue, and mets won't let me. Everyone is different. There is still time for you to decide. Do what's best for you 😉.
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Lita, that's the same one! Fun place!
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good luck on the scans Kaption, we are all waiting for a great report.
Wow Z, that sounded like quite an adventurous field trip! One for the memory books for sure!
babs, your new SIL does sound like a real sweety! I yearn for my daughters to move closer...Although my newly engaged daughters fiance's parents are moving closer to us shortly, so that should guarantee more frequent visits from the daughter and future SIL. They can hit two birds with one stone!
Lita, I am originally from the Bay Area and love going into the city although the traffic is almost always a nightmare. You were very smart to bring the wheels! I''ll bet the weather was glorious!
micmil, I am not a hat person either although I LOVE them. Wish I rocked them better too. My issue is protruding ears. LOL!
Prayers and hugs sent your way Louis. My heart hurts for you two right now. We all look forward to hearing your wife is home and soaking in some Spring sunshine. I am like Z in that hospitals are not my friend. I have a real phobia.... even more so since Dx.
Lynne hope everything goes OK with your Dh! I too worry more about my Dh than myself as he has always been my rock. It's hard to realize that he too is getting older and gets hurt or sick more frequently. Scary.
I've had this nasty little cold the last few days and today I sneezed hard and it wrenched the rib they recently found a met in. It hurt and freaked me out a bit. We'll see in next scan.
Happy Monday to all!
(Personally I hate Monday......) 0 -
Lynne, Just popping in to wish your dh good luck as he has the scans today. It sure has been a long road for both of you. My dh had MRI recently and it was ok. He was diagnosed stage 3B so we know only too well what that means. Hug to you as well.
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Lynne, positive thoughts, prayers and good juju for your hubby today. If you will be at one of the main hospitals connected w/DF, you might want to see if Carol is there. She had been hospitalized again -- just not sure which one. Trying to find out, but it's been hard to catch her or her daughter, who let me know she's there.
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Thanks you, Deanna. I am sorry to hear that Carol is hospitalized again. We will be at Brigham and Women's all afternoon, so I will check to see if Carol is there. DF is physically connected to B&W and has dedicated space in the hospital for their patients. How are you doing
Lynne
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Lynne, I figured it was B&W -- just hadn't heard for sure. I'm excited that you might see her! And I'm doing better this week -- my week off Xeloda. Thankfully, I seem to be one of those who improve -- especially the HFS -- in this week off, which is a blessing. I actually realized I felt fairly "normal" (albeit some foot pain) this morning, for a change. Blood work and local onc appt this week. Hopefully TMs will show signs of improvement. They'd hit an all-time high (for me) prior to starting X.
JFV, severe lower back pain was one of the early signs I also missed, chalking it off to going from wearing flipflops all summer to boots in the fall, as well as hauling around heavy tile and wood flooring samples because we were doing some remodeling after being displaced by a flood -- so lots of stress as well. That was in October, and I was re-dx'd January 1 (2014), after a particularly severe bronchitis-like illness over the holidays I couldn't shake led me to see my onc for reassurance -- which he initially gave me, until my blood work came back with significantly elevated TMs and liver function that led to a PET.
Babs, love that your new SIL is exploring employment in NYC! I'm sure he has the charm to land any job for which he's qualified!
Hope everyone's week is off to a positive start! Kaption, I'll be watching for hopefully really good news from your MRI.
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Thanks to all for the prayers and wishes. Scan results are in!
It is literally the best PET results I've ever had! Yay for Xeloda. "Near complete resolution of FDG uptake." Nearly all bone spots are vastly improved.
Now, the brain MRI is more complicated. The lesion is reduced from the radiation (about the amount expected). The question of if this is lining/spinal fluid is a bit harder to answer. For now, it is not the dreaded LM because I would have already gotten much worse by now. But he will do another MRI in about 3 months to be sure nothing scary shows up. This brain stuff is so different from bone mets. I'm still learning and still confused. But, bottom line is, this scan was good news!
Time to breathe and celebrate.
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Great news, Kaption! So happy for you!
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Kaption, very happy to hear your good scan news
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Deanna, hope Xeloda is this good to you! And I've hardly had any se!
Thanks, lynnwood
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Kaption, I'm so happy for your good news! Xeloda has been good to you and I'm glad your se's are minimal!
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Cross posting because many of us knew and cared about Cristina (cjanet)...
https://community.breastcancer.org/forum/8/topics/...
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Congrats kaption!
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Kaption~ congrats!! Yay ! Clapping hands. So happy for some good news. Prayers as always! ~M~
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Oh Kaption, I'm absolutely thrilled to read your results!
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Deanna, NOW I know Cristina! I didn't recognize her " real name" in the other group.
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Kaption, WOOHOO for the great scans. Have a party and celebrate!
Deanna, I am glad that you feel some relief during your week off of Xeloda. Good luck with your blood work and appointment. I hope your TMs are down.
LindaE, Do you still have that numbness and slurred speech you were experiencing? Have they come any closer to identifying that cause?
Lindalou, My husband was also stage 3B. Grrrr. There is no chemo or radiation for kidney cancer because they are completely ineffective. So once surgery has been done, it is all just monitor and hope for the best. There are some clinical trials, but so far nothing has been shown to make any difference in the incidence of recurrence. Well, so far so good. Fingers crossed we will get for good news tomorrow.
Lynne
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Kaption-that's GREAT news about your scan. CELEBRATE!!!!!!!!!
Deanna- please send Carol my best. I'm hoping that you get similar results from X that Kaption got.
Louis-any updates? I hope your princess is doing better.
Lynne-when will you get your DH scan results- fingers crossed they're good!!!!
Babs
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Babs, We will get results of Dh's scans tomorrow morning - another trip to Boston! I hope Louis checks in soon. I am getting worried.
Lynne
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