Zoom Meet-up for Those With MBC: Place to keep chatting
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@Rosebessie Thank you, Rose.
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Just tried this last Monday. Now I can have "wine" without having to take a medication break while on vacation! It is processed exactly like a Sauvignon Blanc and then the alcohol is removed by reverse osmosis. Both my husband and I can't tell the difference. Can't wait to try the Rose and Red blend Giesen also makes! Taking a couple of bottles on our next cruise!
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@going2beatthis Thats awesome.
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I will not be on the Monday or Wednesday call. My brother died in the early hours of Friday morning, 21 days after going to the ER for pain. Pancreatic cancer is a sneaky SOB.
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I am so sorry for your loss.
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Oh seeq, that was so fast. We're so very sorry!!! 😓
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Hi all - Has anyone else ever experienced this?
Went for my brain MRI yesterday morning. All was going well until the technician tried to administer the contrast which she does from the room where she is monitoring the computers. They changed from manually administering it to connecting the patient to a device a couple of years ago. This time it did not work as it was supposed to. Instead of it going into my vein and feeling the coldness of the contrast, I experienced a very painful sensation. It had leaked into the tissue and boy did it hurt. I screamed in pain. The tech came running in and got me out of the MRI as quickly as she could. The nurse took me to another room, iced the injection site and called the doctor. After a good period of time, she put a needle in my other arm and the tech did the contrast portion of the MRI. By the time I was finished, my arm from my elbow to about 2 1/2 inches below had swollen. I asked to see the doctor again before I left the facility to ask what to do and what to look for. He told me to use heat on it 2-3 times a day, to go to the ER if I couldn’t move my fingers or had any numbness and that it could take 2 to 3 days for the contrast to get reabsorbed.
Last night the area of the injection site had gotten harder and redder, and was a little warm. I slept with my arm elevated. This morning, the swelling is better although the injection site is still warm and hard and the tips of my fingers are feeling tingly. Am probably going to go to the ER for peace of mind.When I go for any future scans that require contrast, I will be sure to let them know what happened and ask (beg) them to administer the contrast manually or at least check that the needle is in my vein before administering the contract. I plan to call the head of the department tomorrow morning and see if something can be added to my chart so that this does not happen again.
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Wow! I am so sorry that this happened to you. When I had a brain MRI, the contrast was injected manually. I agree with getting a note in your file about not having that administered in that way again!
Mary Jane
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Am so sorry for your loss, seeq. May you find some comfort in knowing that no he is no longer suffering. Sending condolences and prayers 🙏🏻🙏🏻 to you and your family.
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Seeq, I’m so sorry to hear about your brother. That sneaky beast stole my BIL several years ago too, it’s terrible.
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SeeQ sorry for your loss.
Tanya
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Hi everyone - I wasn't expecting to post after joining the call today, but I have yet another roller coaster development. Since I won't be back on the Monday call until June 3rd, I wanted to let you know what happened. Apparently, the test result I read on my own yesterday was not the ESR1 test, and my interpretation that I could not take Elacestrant was completely incorrect. My new oncologist called me this afternoon to tell me that I DO HAVE the mutation, so I am a candidate for the drug. She ordered it today, and I will start it when I return from my trip the week of May 28th. I am very relieved. My hope is to get a minimum of 6 months with it so that I can take my trip to Tibet in October. So Kris, I will also be on the medication the next time I see you.
I will miss talking to you all while I'm away, but I am excited to see Hungary, Serbia, Bulgaria and Romania (including Transylvania!) for the first time. I'll let you all know if I find Dracula. 😜
Talk to you on June 3rd!
Cheryl
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@seeq My heartfelt condolences on the passing of your dear beloved bro. Pancreatic Cancer moves incredibly fast. God bless his departed soul.
@going2beatthis Fay, what a nasty experience 😳. I went through that in 2021 but with the manually inserted contrast because the Radiographer got impatient looking for a vein so he just shoved the damn needle into my inner elbow. I suspect the contrast went into my tissue. A large area surrounding the sight was gray, excruciatingly painful and I couldn't use my arm it for 2 weeks. I feel you but I'm glad you're better. Sending hugs
Cheryl.…all the best for a fun holiday. ENJOY 😉 🤗
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@temerarious Oh, Cheryl, that is great. I will be happy not to be the only one on this med. I’m finishing up my seventh month, so I hope you get many more months than six. I have just a few tips for you, if you don’t mind. If you have acid reflux, it will be best to take Omeprazole for the first few months. Also, the first four months are the hardest. You may need naps, and I was a little more snippy than normal with my husband. Also, it needs to be taken with your highest fat meal of the day, and I would highly recommend taking it in the middle of your meal, not before or after. I went to dinner with my husband one night about a month ago. I forgot my pill. I ate, went home and took my pill, and was in horrible agony for about 24 hours. It felt like my insides were being burned. I’ve not done that again, and that’s the only time I’ve had an issue. My tumor markers have come down to only 30 points above normal, the lowest they’ve been since 2016. I am hoping to stay on this for a lot longer. It’s been one of the easier medications for me. This is my third line.
Have a fantastic time on your trip.
Your timing for your Tibet trip should be perfect since you will have been on Elacestrant almost five months by then.
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@kbl Kris, You're always so resourecrful about everything to do with MBC. You're our go-to person for most questions and yet you've also gone through so much while remaining positive. I just marvel. Have a lovely week. Sending hugs
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Thank you so much for the tips, Kris. I also read the Elacestrant thread last night and listed to the pod cast - both were very informative.
I have another trip planned to the Baltics for almost the entire month of August, which is why this medication option is so helpful. My travel schedule was not going to allow for the Faslodex shot every 4 weeks, so I'm very grateful to be able to give Elacestrant a try. Fingers crossed for a low side effect experience!
Cheryl
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Cheryl, I’m so jealous of your trip to Hungary. I am Hungarian and my real name is ilona (fairly common name there), also the name of Vlad’s (Dracula) 2nd wife, I believe. Have the best time!
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@Rosebessie Oh, my goodness, Rose. What a sweet thing to say. Thank you so much. 💕💕💕
@temerarious I hope you don’t have any side effects. This med has been very tolerable. I hope we both get to stay on it for a long time. I just remembered they are doing clinical trials with other meds added with it. I’m not sure if you’re interested in that. I had already been on it so couldn’t enter any trials.
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Illimae - I'll be on the lookout for any historical portraits with a family resemblance to you! 😍
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That somehow seems fitting for you, @illimae re: having the same name as Dracula's 2nd wife 😂
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Mods, there’s also a Hungarian queen ilona and my favorite is that ilona is the name of the queen of fairies in Hungarian folklore.
Cheryl, my pre married last name is Sandor. I’m told that Sandor castle used to belong to distant relatives, I think it’s now used by the president or other government official. Wish I knew more but the language barrier is too much.
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Hahaha, that is amazing, @illimae. Queen of the Fairies does take the cake. See you Monday. 😎
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Oh nice, @kbl! It'll be more comfortable than being in the truck. 😎
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@moderators Lol. Yes.
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I wanted to let those of you know who come on this Zoom that Debbie D. Just let me know she’s going to be entering Hospice. She said to tell you all she loves you. My heart is hurting. I’m so grateful to have been able to meet her. She has had such a hard journey.
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Thanks for sharing this difficult news. She is a shining light for us!
MJ
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darn it, I was really hoping that this was a temporary set back. I hate this. Thank you Kris for keeping us updated.
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