IBC lounge: roll call, support and just a good place to hang out
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Oh, Moreshoes, I am so terribly sorry to hear that. What a dreadful way to put it to you. When they say "not cureable, just palliative" - that does not mean they won't work to put it into remission as best as possible, do they ? When I found my breast cancer was metastasised and considered incurable, but they didn't say it that way, they said, from now on "from now on you'll have to live with it", but it is different than sending us home to die and saying we can do nothing more. Even under the rubrique of "palliative" they should be able to do for you all they can, or at least as long as you wish.
Returned this morning from my second 24-hr hospitalisation. I felt fine, but towards the middle of the end of first day I felt lonely and bored and sad, and missed my hubby who is so funny and warm, even doing nothing just being there he makes me feel better, but I didn't want to put the burden all on him so I just stupidly cried, then finally got involved in writing a "biography", and listening to music which helped. Then by miracle, the nurse informed me that there was a patient in the room next door who had recognised me, and would like to see me it was my couturier from the last opera concert I did in France, but that he was currently in physical therapy and she would let me know when he got in. Actually he is a dress maker for period costumes for various opera companies, even television I think, a lovely lovely man, who was also quite openly gay, in a very fun "screaming kind of way", but deep inside rather lonely and sad. He was always absolutely adorable to me, in the way that these gentle people so often are with other artists. I went into see him, being warned he had had a tracheotomy, and there he was waiting for me with a little writing board, "Bonjour Paula" reintroducing himself in case I could have forgotten ! He was a shadow of his former self, in size, no longer a bit fat, but very slim. He could not speak, only write but his eyes spoke volumes, and he was able to say the essential with his little writing board. He held out his arms to me, and I gave him hundreds of little kisses. We talked about many things, I learned he had only recently lost his mother, a real calamity. He wrote that she was now in paradise. It took me many tries before I understood the word he wrote since it is outside of my sphere of thinking - it was hard to imagine ! I know this was a personal calamity for him. Here he was, his entire life having fallen apart, losing a mother, and now his trachea ? to never be able to speak normally again ? He had a vaccuum tube to clear spit out of the hole in his throat, which he guided with help from a little hand-mirror. I had to master myself to not be a bit horrified by this. Here he was so destroyed, and yet so full of love ! And here we were both so sick, and comforting each other. He drew me the dress he would like to design for me one day on the writing board, he has always said he would like to make me a magnificent concert dress, this illustration was a typical Princess dream. (Sad to say, but I really do not see myself going back up on the concert stage again. Here I am 57...haven't sung a note in months. ) And when I told him my husband and I are looking for a house, he wrote "'château !' - I thought - so that is how he thinks of me, such a romantic ! Always to be a princess was of course some kind of secret childish wish but now I know that to be a real princess, one only needs a person to love, and a place to share that, a blade of grass to grow for us, and another day to breathe together.
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Life is every day.
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Very sorry to hear your news MoreShoes, but as amarantha and LotiCA say, going to Stage IV is the start of a new treatment phase, not the end of the line for you. My pal Rob got lung Mets four years ago and wasssuccessfully treated, then also for bone Mets. While you don't getvchemo, you do get treated with a range of wonder drugs that weren't available when you were first diagnosed. And, yes, palliative care is the term used for Stage IV treatment, they haven't finished with you by a long shot. Keep us posted as we're all on your side here. Best wishes as you start this new phase.
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Amarantha, that's a lovely account of the meeting with your designer friend. How good is it when we are transported back to times we loved and thrived in, not just because it takes us out of a depressing moment, but because it proves to us that we have had lots of joy in life. Anything you write here is eagerly anticipated by me and I hope to hear more about your interesting life. Finger's crossed that treatment two is working as we speak.
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Amarantha you have such a beautiful soul. I loved reading your story about your friend.
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Thank you so much for your wonderful replies, and taking time to read me, Lorica, Traveltext. Well now people, I do wish I could have something more hopeful to report, unfortunately I just saw the radiology doctor - so far I have had just nine sessions of radiation, along with two infusions of Cisplatin. I showed him the very rapid progression on the left side (the side we are NOT treating, which was maxed out on rads in 2014) - he agreed with me, that the left side has progressed too much, and seemed quite concerned. He said he would talk to my oncologist, and would not be surprised if there were another change in treatment. I asked in there were any likelihood that after 25 days of radiation, surgery would become possible. Of course it is too early to tell, he said, and will be too early too tell until *two months after the last radiation* (!) What ? Two months after ? I said, I don't have two months, this is worse every day ! He said with a gesture, which he conceded was unfortunate that the danger is that this breast will explode (I made him say it) and I will be left with open and ulcerating tumours. He agreed, since I asked, that the port was not well placed it is because right in the middle of the field of radiation, and it would have been good to move it but certainly not possible now, as it would create a scar and probably not heal. (Although I do not see why we could not just put in another one now some where else, say in the thigh, without removing the current one which is above my right breast) We're stuck between a rock and a hard place. I'd like to try to get to the end of this treatment before giving up, but if it means the other side is progressing dangerously, not sure what to think.
On the other hand, if it is just skin mets making their way down my chest to the abdomen, skin mets won't kill me, they're just ugly. It's just .... what are they a screen for ? When the skin mets are moving they usually are testimony to worse things going on inside - bones and lymph nodes, etc. So ho hum, I be stumped. For once in my rather breezy life, I'm feeling unable to come up a hopeful perspective. Give me a day or two, I'll rally. But jeez, this is feeling heavy, and the doctor was not able to hide his dismay. I will see him every week from now on, he said. And rather than communicating by writing what the next decision is, (as I requested to be kept informed very quickly) he would prefer to tell me in person. So arrrrrrrrrrrgh. Hurry up and wait for next week's instalment of Amarantha goes wackdoodle.
Meanwhile ... getting slowly used to the New Ugly. Went out without wig, too damn hot to be pretty, so lesbian truckdriver buzz-cut it is. Skin too irritated to wear the stick-on prosthetic breast, so I have an old smaller, mismatched one that fits inside a bra pocket. But I have to wear a loose and formless bra because of radiation, and of course it does not hold the prosthesis in place. The lovely little boob floops downward and I look like one of those comical lopsided ladies you and I all still make fun of ! Don't deny it !! Right ... serves me right. And the needle and tubes sticking up from my port create an attractive third lump above my right breast. Three-breasted martian. With tubes. I'm wired on corticoids (solupred) and have become "hargneuse" argumentative and combative just like the lesbian combattant my hair is imitating, (husband putting up with it, we are engaging in take-no-prisoners literary and social arguments. (Hello. I'd like an argument please !) HIs usually sweet wife is "hargneuse".
Harumph.
Peace.
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amarantha, beautiful lady, you make me laugh and cry at the same time. I chuckled out loud at your "lesbian truckdriver/combatant" because I told my husband that I am taking extra care with makeup, jewelry, and how I dress these days for that same reason hahaha (although here in California it's not out of place)! I'm trying to tell people that I am going for the aging punk rocker look since my now 2.5" hair likes to stick straight out and often forms a mohawk at the top of my head. Why even bother with a bra? I had to go without for 6 months (too painful) and had a light wrap I used for modesty even on the hottest days.
I'm so sorry to hear that the left is getting worse and not responding to the cisplatin. When my tumor fungated/ulcerated it was the scariest part of all of it for me because it was so visible (not to mention painful). I truly hope it doesn't happen to you. Not much I can say about treatment alternatives, all of you have more experience with it than I do. Just wishing you much love, peace, and healing and that your doctor finds something that works for you.
Lori
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Amarantha, I really don't see you as hargneuse but you certainly have every right to be, since you must get your doctors working harder to arrest the inflammation. Having the left side flare up again four years after the breast was removed is such bad luck. Especially as you are now having radiation on the other side to prepare for another mastectomy. Unfortunately the two months before they can decide if the op can go ahead is because the breast tissue is so inflamed, and more so due to the radiation, and they can't operate with the skin in such poor condition. I'm sure the port will be moved once they decide on the best drugs for you. Meanwhile, I picture you with the loppy boobs and the buzz cut going about your business and generally doing all you can to remain calm, even a bit hargneuse. Keep it up.
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Dear Amarantha, (air hugs), love your spunk, beautiful soul and stories! So sorry to read about your progression, I am here to rally with you. Sorry, it has been 4 years that I last wrote, now I am retired no more excuses.. Have you tried Xeloda? I was taking it orally during radiation and after surgery. My simple mind just thought not to use port was a good thing. And the IBC specialist was recommending it for other skin mets patients. I know every one’s response to chemo differently and French system is bit different. Press on, Amarantha.
On a different topic, I found chemise with bra pockets to insert cotton pads was comfortable in summertime. I was even stuffing cold gel pack in it. I chuckled at your three-breasted Martian lesbian truck driver/combatant description, that’s the spirit! You are in my thoughts and prayers
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Thanks for coming back to BCO and for dropping in to the Lounge Leslie2010. We need all hands on deck right now, especially TNs.
MoreShoes, where are you up to with your new treatment plan?
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Thank you, Traveltext! I actually struggled for a long time whether to jump in the forum or not. I’m a terrible writer, and afraid of hurting other people’s feeling. You are right, we need all hands on deck.
Moreshoes, (air hugs) to you! I’m with you... Similar thought came across my mind while I was traveling in beautiful Amsterdam last year, why not try some different drugs. Good thing was I was traveling with my nephew, a pc survivor, I had to behave.0 -
HI Leslie, thanks so much for joining us ! Xeloda has not yet been on the menu. I'm looking it up. In what circumstances is Xeloda usually offered ? Ah - you did explain. Hmm. I wonder if that will come up next. Possibly. Does it require a certain profile ?
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Searching Xeloda on BCO turns up lots of results including this thread on the drug and TNBC:
https://community.breastcancer.org/forum/72/topics...
The drug is taken orally. Ask your team about this amarantha.
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More Shoes, sorry you have received the news of cancer spreading. It is so scary to hear and I am available anytime here or through PM. Hugs to you.
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A good article on Xeloda, definitely sounds like something for you to discuss with your doctor Amarantha, seems like a good fit for your situation. I did a quick check on the EMA site and it looks like it is approved in the EU.
https://www.cbsnews.com/news/breast-cancer-drug-xe...
Glad you decided to jump in Leslie2010, it can get quiet around here sometimes because there are so few of us. The more the merrier, and I have thick skin so don't worry about hurting my feelings!
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How are you doing Mara?
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Amarantha, I’m hoping you will ask your docs ASAP, I honestly do not know whether in France certain profile needs to be met to be offered Xeloda. It was recommended by the IBC specialist that I should do Xeloda concurrent with radiation after my initial 6 months of DD chemo with uncertain response, before surgery. After surgery, my local team declared no residual cancer, but the IBC cancer center found cancer cells peppered around margin. So I took another 5 months of Xeloda despite my local onco team deemed unnecessary. I was lucky and with the grace of God, I am still NED after 7 yrs. Other than hand-foot syndromes, it was easy to take. There was other chemo recommended to me, but I couldn’t remember the name. In short, there are more on the menu for TNs. Just keep on asking...0
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I am currently NED from the neck down. I have an MRI this week to see if the radiation this past Easter stopped the new tumours that were growing in my brain. I feel well overall right now. Thanks for asking.
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Mara, you're coming up for two years since your brain mets diagnosis, and you've had remarkably good success with your treatments. Good on you. My pal Rob had surgery for brain tumors a couple of weeks ago and would you mind a PM from him?
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TT, thank you for asking. No treatment plan for me. They can't do anything, they say. This week Friday I'll hear the results from Amsterdam. The oncologist told me to go have vacations and enjoy my life for as long as I feel okay. I'm sad, angry, bitter and in the meantime I try to create memories with my kids. I haven't said anything at work. 1) I don't know what exactly to say and 2) it gives me a sense of "normality" to have to deal with mundane things.
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TT, no problem, he can message me, thank you for thinking of me.
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MoreShoes, I don't know what to say, but I'm shocked that your medical team is giving up. Spots on lungs are regularly treated. Could you not get a second opinion?
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Dear MoreShoes-It's OK to cry and after some time, I believe the "numbness" will fade. I do like that you can still crack sassy jokes though! I think under the circumstances, a few laughs of day might be a good remedy to help boost more positive vibes. Also, know that you have us here to listen and hopefully, also pep you up on the tougher days. I'll also be saying some special prayers and sending them your way!!
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TT, the oncologist said that I already had all the chemo's she could think of and it didn't help. The cancer is coming back. There're some new things to try out, but she asked me if I really want to deal with chemo here and now. The plan is to go and have vacation, and in three months (if I don't get problems earlier) to have another scan. Then we can see how fast the cancer grows.
I'm still numb, Fran, and it hasn't downed on me.
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MS, I can't see from your signature what treatment you've had, so I don't know if your onc is right. But, have you just gone Stage IV, or have you been having active treatment for a while now? And, if the relapse is TN, then that's a pretty aggresive bc to leave for three months without treatment. We all have to make our own decisions, but we all have to be our own advocates. Of course, you should do what you feel us best and we will all support you whatever you and your medical team decide is best for you and your family.
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Moreshoes tell her yes, yes you do want to try some more. And get another oncologist who is capable of thinking of some other solutions, and maybe a whole new team. (Have you done Halaven ?).
I'm going for Cisplatin #3 tomorrow, third of five 24-hr hospitalisations. I'm preparing books on tape so hopefully won't get so bored this time.
Peace
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Hi Moreshoes, I'm so sorry for the recent news. Please hold on to hope. I was dx with lung mets de novo 12/2015. My lung mets resolved 03/2018. I'm NED from the neck down. I still have tiny brain mets but they continue to shrink on Gemzar/Carbo.
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Thank you all for your thoughts and advice. I had twice FEC and the last time Gemzar/Carbo. I didn't have any treatment for two years now. In the scan they saw that there was a tiny spot which they missed in 2016. They're sure it's TN again, cause after three times, the chance to be positive is nihill. Keep on coming with suggestions, ideas, questions. I see her on Friday and I'll be more prepared this time. Before I was hoping for a miracle.
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MS, can you list the treatment you've had up until now and the dates?
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Good gnus, folks: I had my third chemo and 13th radiation today. Everyone (nurses, radiologists, interns, chemo doctors, radiation doctor) has been freaked out about how red everything is, but my oncologist, who came to see my in the hospital yesterday, said though the left side is a bit worse, it is not freaky worse, and that since she saw it before everyone else, she has a better ground for comparison, that we should not worry. And furthermore, she observed with me that the right is now beginning to show signs of improvement: whole white spots are now appearing on my breast, which was entirely red two weeks ago, and there is a hollow spot now in the breast where clearly the cancerous tissue is melting back. Actually a reaction ! Amazing.
Please, nobody ever give up. And Moreshoes, in the two years since you were last treated, so much has happened in cancer research ! It is not even the same world. I cannot even recognise my cancer center. They have all this new equipment, new technologies (now they have a cyberknife, curietherapy, all kinds of fancy new radiation things, and new scanners and Zeus know what else.
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Good morning, all! I've been away for a bit, nursing strep throat at my advanced age. It made me think about how medical care continues to march forward--100 years ago, a streptococcal infection might have led to death from sepsis, heart or kidney failure. Now it's usually just an uncomfortable illness that's cured with a few days of antibiotics.
MoreShoes, I echo what everyone else has said here--get another opinion. Only you know if you're OK with what your current caregivers are advising you, but from what you've said here, it sounds like there's more to be done.
Amarantha, your description of your visit with your friend during your hospitalization brought me to tears and laughter. You have such a poignant way of expressing yourself! And yay for the melting of the redness--we'll take it!
Lori, my California friend, I so value your cheerfulness and head-on approach to dealing with BC.
TravelText, you are such a mountain of strength, hope, and good advice. You're my hero.
Leslie, Geeper, Fran, Mara, good to see you all here! Blessings to everyone this Independence Day (for those in the US) and this July 4th (for everyone)! SB
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