My Husband, My Life, My Love, My Family, My Cancer
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Quick note: The MBC zoom group starts in about 15 minutes. I missed last Monday (chemo nap, lol) but I’ll be on today, if anyone wants to pop in
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I’m going to try to figure that out one day.
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Mel, do! I was there today. It's nice
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candy: I am sorry about your sister. I am with the rest of the poster. You have your own cancer issues and now the loss of a sister through cancer. Don't worry about pocket duty for any of us. We'll think of everyone else and pop in to post afterwards. Take care of yourself. Be with your sister.
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It was ice to see Moth and Mae on the Zoom call. I’d love to “meet” you, Mel.
Thinking of you,Candy
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reporting for any pocket duty and checking in to let Candy know I’m thinking of her as well!
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Thanks Mel and all. I am doing Zoom appointments with RO and liver surgeon today (from home) then I will go back to the Nursing Home to be with my sister.
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Candy- in so glad to know you are able to keep your appointments with the surgeon and RO. Thinking of you and your sister.
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It hasn't been mentioned on this thread yet but we learned on the liver mets thread yesterday that JFL has died.
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Damn, I’m very saddened to hear about Bliss and JFL, perhaps I’d be more prepared for this news if I had followed the liver mets thread and realized the recent troubles. It’s been a though couple of weeks with losing Jaycee too.
Moth, thank you for letting us know.
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Candy— hugs and prayers for you and your sister.
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I am sad sad to hear about jfl. She posted here occasionally and hadn’t seen her here lately. I don’t know why they say things happen in threes. This has been a rough few weeks with loss. I hate you cancer.
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I hate cancer too.
Had bloodwork after a few months and was told it was perfect. I also got echo results, heart function still 60 to 65 percent and working as it should. Had my Herceptin too. Also have another MRI to check my brain due to enhancement. It falls in the middle of the trial but I am keeping the cancer appointments. Not going through rescheduling woes.
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Not great news for me. 2nd Scan shows fluid on lung again though small - and nodes in pleura slightly larger. Plan short term is to increase Xeloda dosage by extending from 10 to 14 days to see if the dose was maybe just too small to be effective. Beating in mind the SEs were awful initially and are now fine. My MO was clearly surprised as my first scan was so good. We’ll try this for 2 cycles and rescan. She said this is not normal practice, but neither was my severe initial reaction expected. Cross posting to xeloda / lung mets threads for any advice.
Feeling the heavy loss of so many of us recently and I might be wise to take a break from BCO for a while just to keep my head straight.
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It's been awhile since I've been here. I'm currently in the waiting area for another scan. Had a brain scan last week and a possible lesion was seen on my cervical spine. So a closer look is needed.
I'm closing in on a year since MBC and I met. I am feeling this undercurrent of panic that I've not made these last months count and the clock is ticking.
I know its pessimism but I know someone here will understand.
School starts next week and I have almost everything my girl will need. That feels good because it seemed like a huge mountain to climb.
Love and Hugs
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Karen,
Fingers crossed that the small shift in xeloda dosage will do the trick for you.
I agree that the news on BCO has been heavy lately and I too have been considering staying off the boards for a while. There comes a point when too much bad news drags us down.
Good luck on this new approach with the xeloda. Unfortunately, I have no advice -- I am still on 1000 mg a day, one week on, one week off because I cannot stand the side effects related to nausea and appetite suppression.
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Karen, I am sorry to hear about the pleura. Hope the increase in the xeloda is just the answer needed for you.
There has been quite a bit of bad news here for sure as well. Many people struggling or gone now. It is always sad. I really miss Zarovka who updated t he fitness thread Stage V and Rosevalley as well.
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My Onc called this afternoon and wants to schedule a brain MRI as well as a biopsy for a lung nodule that had increased in size on last CT in June. He is concerned about my continued low sodium and wants to make sure something isn't being overlooked. I've had a brain MRI before so I know how that test feels. I've never had a lung biopsy and am very anxious about it. Has anyone here had one and can you share your experience? I'm a nervous wreck!
Karenfizedbo, sounds like you have similar problems. I also have a pleural effusion. Good luck to you.
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Lee, I've had 2 lung biopsies. Both were day procedures done in Interventional Radiology in the CT suite You start the day with a baseline chest xray & in my facility they like to start an IV (this was before I had a port) just in case they need it. For one biopsy I was pretty much flat on my stomach, for the other I was propped a bit so I was a bit more on my side. The nurse positioned me carefully, speak up if you're uncomfortable, ask for more pillows, bolsters etc because you have to be still for a bit while they're doing it.
They drape you & wipe you with disinfectant solution. They put in freezing - so it's just like the little beesting pinch for a breast biopsy. My nurse both times came over to hold my hands while they did that - I didn't need it because I honestly barely felt the needle but I thought it was very sweet. They ran me through the ct for a bunch of very quick scans in & out while they positioned their needle. Don't look if you're grossed out - it's a super long long needle. They position it on its own, and then when they have it where they want it, they thread an instrument through it which grabs the samples. I only felt pressure. They said if at any moment I felt pain to let them know and they'd stop and inject more local anesthetic. When they were done they just covered the hole up with a bandaid.
Then they wheel you immediately to xray again for chest xray, then you go to recovery and wait, and then go for 2 more chest xrays (or as many as they decide they need) at set intervals of time. it's all because of the small but real risk of a lung collapse so they're constantly checking to make sure your lung is inflating well.
Bring stuff to read or a battery bank for your phone to make sure you have somethingI to do while you wait for all the chest xrays. It's mostly a lot of boring waiting.
Karen, I hope the increased Xeloda does the trick. This stupid disease is so draining.
tangandchris - hi, nice to see you again. Glad you got the back to school stuff done! it's a big task! I've had lots of the same feelings as you - am I doing the right things? Am I pushing myself enough to get things done? Will I regret not not having done more when I inevitably feel worse? I have no answers...just know you're not alone.
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To All: it has been a horrible year thus far. We lost so many in what seemed like such a short time. I can't find anything about Bliss except that she is gone. CJS Librarian? Gone? And so many struggling. Empty spaces that once held a bright light.
Karen, I take breaks as well when I am not lurking and/or not posting. It levels me out then I can come back.
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Mara~I am glad you had perfect bloodwork! It's good when you pass important tests ! I always worry about my counts because of ibrance.
Karen~oh no!!!! Anyone would understand a break to take time for yourself. Self care is number one. I am sending you a big hug.
Tang~school starting already. Time flies. I am wishing for you a smooth school year and some good news on those findings. Hugs hugs.
Lee~ I'm sorry you have to do that, thanks Moth for the Information, I have never known the procedure. Good luck and I hope it's over with. Quick .
Moth~ you have a lot of knowledge! Thanks for sharing.
Elderberry~ I worry about all the sisters that go radio silence. I wish there was a way to know how they are. It's like a hole. Loss is seriously shitty.
Omg Candy……….I think my brain is broken. Thinking of you and your. Sister….
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candy - I'm thinking about you. You have a lot happening now. I hope you are finding moments of calm.
chemo day for me today. Going to try to get some stuff done before I go, walk with Olive and then dh is driving out with me. It is supposed to be very hot again here today
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Moth- Thank you for you comments to me. My "moments of calm" is when I am asleep.
I posted on the Liver Met Thread about my RO and liver surgeon appointments. Not going to rehash here, but maybe you guys could read my post and see if you have any advise.
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Candy, I don't have any advice for you, just cyberhugs and good thoughts.
Karen - sorry about the scan results. We have had a run of bad news here lately. It's definitely sobering.
Mara - hooray for good test results!
Tang - in your pocket waiting for scan results.
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Moth, thank you so much for the detailed info on lung biopsy, I appreciate it so much. I was supposed to be called today with these appt. times, but never heard. I just want to get it over with .
Mel, I hope you are having a nice break without any trauma. Is your toe all healed?
Hello to everyone; it's nice to know that we're there for each other.
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Lee~Toe is feeling fine. Thank goodness healing well and not much pain. Of course kicking the step doesn’t help. I can get my shoe on finally. Thank you for asking. I hope you’re doing well. As well. Thanks for remembering…
Candy~💐
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Thanks for the laugh, Mel!
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Good one, Mel.
Glad to hear the toe is healing and you aren’t in any pain. I hate to hear of any of our MBC sisters in pain.
Today is my first official day on hospice. I have a couple of folks from Suncoast coming to answer questions and get me prepared. I am okay with it. I feel like this old body can’t take much more, and I’m at peace. If anyone is curious about hospice care and has any questions, please let me know. I’m determined to stay connected here until I can’t hold an iPad. I want you all to have a resource for how things progress until the end.
Hugs to all,
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Laurie, My heart and mind are overflowing with emotions. You are such a special, giving person who is a big part of these boards. I hope you realize how much you mean to people, how much you have brightened our lives. I am glad you are at peace. That means so much. Will you remain home in hospice? How often will the members of the hospice team visit? How are your dh and sisters handling this step? I am so happy that you were able to take the recent trips that you enjoyed so much. You do so little complaining, so I have to ask. Are you experiencing much pain? I hope you are comfortable and still find some joy in each day. I look forward to your future posts. You are in my prayers, my friend.
Candy, I am sorry that your sister is not doing well. I think it is good that she is in a facility where she can be cared for around the clock. It would be too much for you to handle, all things considered. It is good that you were able to have a virtual netting with the specialists. Now you have enough information to make decisions about next steps. It sounds like there could be challenges with the Y90 due to the location of tumors, but keep in mind that the IR has been trained and has experience.with those situation. I am praying for you and your sister.
Mel, I am happy to hear that your toe is healing. You will be dancing around the house before you know it.
I have a lot of catching up to do here. I haven’t been on much lately. Sometimes I just need to take a break. Enjoy your day.
Hugs and prayers from, Lynne
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