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islandgirls

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islandgirls last won the day on February 24

islandgirls had the most liked content!

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  • City
    Ft. Myers
  • US State (if applicable)
    FLORIDA
  • Country
    USA
  • Gender
    Female
  • Status
    Not a patient

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islandgirls's Achievements

  1. Positive vibes!! 💜
  2. islandgirls

    NED is NED.

    @LouT You took the words right outta my mouth! #NED
  3. Boyfriend is getting a second opinion now, too. Thankfully! He has been having knee pain, even before he was diagnosed two months ago, which was mentioned at initial visits in the hospital. His oncologist (in my opinion) has been brushing this off and told him to go to his family doc for it... so he got an MRI (finally) last week. Torn meniscus, Baker’s Cyst forming AND multiple round cystic lesions on his tibia and femur. Now. I am not an oncologist, but am I the only one to suspect bone mets? He already had brain mets... so this was the straw that broke me and I urged Boyfriend to get a second opinion. We shall see, as his scans for follow-up are next week. The second opinion is two days after the scan. Oncologist also has blown off Boyfriend’s sleeping issues. Some due to knee pain and some just insomnia probably from the dexamethasone and the diagnosis! Says he only prescribes Ambien so otherwise Boyfriend can consult with family doc... SLEEP IS ESSENTIAL TO HEALING!! So a bit frustrated, yet after getting that second opinion appointment on the calendar, I have restored HOPE! 💜
  4. @TJM sigh You nailed it. I feel like it’s when parents get their kids back from the ex’s after a weekend visit and they have to undo some of the behaviors... We don’t live together so sometimes we go a few days without seeing each other. So yes, when I see him again, I literally have to push the darkness out of him. We were at dinner with his friends this weekend, (all vaccinated) talking about the diagnosis and he got up to go to the men’s room. The friends asked, “Is there hope?” Whereupon I launched into my spiel of immunotherapies, advanced treatments, clinical studies, etc. So they said to him when he got back to the table, “We are so glad you are doing treatment.” He said, “Yeah but Daughter and his nurse (🙄) said two of my numbers are bad, so...” He is lying next to me, sleeping, right now. Before he fell asleep I told him how happy I was that he enjoyed dinner and for him to stay over tonight. I reiterated how he sailed through his first treatment (or in my opinion as not even nauseated and eating like a champ!) and he said, “Yeah but the end of the tunnel seems so far away...” He seems pretty down. I am initiating him getting a weekly massage and am suggesting some counseling. How can he not be overwhelmed? But I just gave him a pep talk that went something like this: Remember when we talked that if you chose treatment you have to go all in? Like the biggest poker game of your life? Well this attitude of, “Yeah I guess I did okay with my first infusion” is NOT going to cut it!! Tough Love from his Island Girl! 💜 Oh, and YEAH for your jaunt to Seattle! Sooo happy for you! Enjoy every minute that you have fought so hard to experience!
  5. @LexieCat When we are on the other side of this, we are meeting for a drink! You always make me feel better!! xo
  6. I was going to post a new topic on this!! Boyfriend’s daughter and the snarky oncologist nurse (remember the one who delayed his port placement for two weeks??) have somehow given Boyfriend the idea that his treatment is futile based on his CEA and CA 19-9 levels. Now, when I tell you all the numbers, you may agree... however, he has not treated the cancer AT ALL when these were drawn, as the latest draw was prior to his first infusion. CEA was 1890 on Feb. 2nd now 2868 on March 5th CA 19-9 was 217.9 on Feb. 2nd and now 278.8 on March 5th But of course I have been fretting when I see the level should be under 25. You can imagine where my mind goes with that... I came back at Boyfriend with a white page study with a quote citing: These data mean that you shouldn’t worry about marker elevations in the first few weeks of targeted therapy in the absence of other evidence, such as worsening symptoms, as most of the time things settle down. Perhaps tumor markers shouldn’t even be checked during this early time period at all. So, I am trying to not be unnerved about it as he is feeling better. Had no real hardships from his first infusion except being tired... 💜
  7. @TJM Yes! Hoping he tolerates it like a champ! @LexieCat Yes, he is getting the port two days prior. When I got the news, I burst into tears and had a nice conversation with God. I felt optimistic and at peace all day. However, as the day wore on and right at bedtime, the demons appeared and I was hit with anxiety and what-iffing: What if the chemo really kicks his a$$ and I’ve misled him about most patients doing well with it? What if he goes through these four treatments and there are no positive results? What if it doesn’t help anyway since he has brain mets? Yadda, yadda, yadda... So I went to sleep (fitful as I woke several times which is unlike me), and now switching my mindset back to optimism. It’s hard because his sister told me last night how she is hoping it works because her niece (BF’s daughter) talked to her yesterday saying how she was so against it. The daughter made it sound like the doctor and his (snarky) nurse during the visit acted like basically there is no hope... since I’m not “allowed” at the visits, I have to assume this is her negative interpretation of what the oncologist says. He has “innumerable” BM, and his original scan showed a “nodule” in his right lung, clear left lung, and a spot on his liver, pancreas, spleen with lymph nodes lighting up, as well. But originally the oncologist acted like this was not doomsday, as they were unable to pinpoint his primary from just the scan. I took that as a positive in that his body is not riddled with cancer... hard not to fret, and I will rest easier after the first treatment. Again thanks for the ear!
  8. *The post we have all been waiting for* His first infusion is March 11th! Feeling so grateful and so thankful for all of your support! XO
  9. Oh @TJM, that was so sweet! I am on pins and needles... last night his mother was going on and on about some older guy they know and that “chemo is killing him” and how he “has wasted away to nothing.” This is the negative environment that I am trying to counteract. Hopefully Boyfriend brushes it off, but that kind of talk has to seep in the tiny cracks. I just don’t understand why his family cannot choose to look for Hope!!! It’s all we have and I refuse to think differently. Just praying he remains strong and positive. I cannot wait for him to meet with the oncology nurses or palliative care team... then they can join forces in the science of this instead of chemo horror stories. Wednesday is his appointment. Just can’t shake this nagging fear that the doc may talk him out of it...
  10. Thanks @LexieCat True about the port. Duh. I was just thinking they wanted that in first as that’s how it was originally scheduled. But of course he doesn’t need it to get the treatment going... I just have this irrational fear that his daughter (going with him to the appointment) will somehow convince the oncologist to talk him out of treatment. Silly, I know. But I will just rest easier after he gets his first dose of the “juice” as we are calling it. Thanks, as always, for your supportive words!
  11. Hi All, His appointment with his oncologist isn’t until Wednesday... not sure why the nurse didn’t just reschedule the port (he canceled the first appointment), and she actually left a snarky voicemail reprimanding him for cancelling “three times.” He canceled once. So don’t get me started on wanting to tattle-tail to the doctor about his nurse’s attitude! Ugh. I am trying not to fret over this delay, as if he had not canceled, the port would have been placed on February 22nd with treatment starting the next day... How long between diagnosis and treatment was it for you all? He was diagnosed February 1st, the 3rd with specific biopsy results... then had WBRT for 10 days. I am just worried over this delay. Thanks!
  12. Update: Today he told me and I quote: ”I am doing the treatment no matter what (daughter) says.” I burst into tears, jumped up from the table and ran around to kiss him. Then I made him pinky swear. I am still cautious until the port is in and the first infusion happens, but ladies and gentleman, I applaud and thank you for your assistance!
  13. @TJM ... yeah. I already went there. I mentioned that not choosing treatment could be (and he finished my sentence...) ugly. I am sitting here telling myself that I have done all I can to give him good information to weigh in his decision. It is out of my hands and I am hoping your bet has a big payoff. For all of us!!
  14. I am so grateful I found this site. Reading all of your words of encouragement has given me such hope, and I am doing my best to convey that hope to my boyfriend. Last night he was really overtaken with emotion when he asked me to pose this question. I read him a few of the responses this morning. But I have to proceed cautiously, as his thinking and reactions are still being impaired by his BM. I trust my instinct on when info is becoming overload to him, and I sensed that and eased up today. However, in conversations today with friends I heard him say “debating chemo” instead of “not doing chemo.” Baby steps. But I don’t want him to hesitate much longer... Your input and personal stories may just be what inspires him to fight, so please know how much I thank each one of you for sharing your story and urging him to join all of you as a survivor. Hopefully I have a positive update for you, soon!
  15. Sitting here with my boyfriend (stage IV adenocarcinoma with brain mets) and he just finished 10 days of WBRT. His question is what was the response that your immediate family members had to the diagnosis? Did they support you seeking treatment? He is struggling with his daughter who doesn’t want to see him suffer through chemo. (His only option right now is the triplet of chemo/immunotherapy as he has no actionable mutations and a PD-L1 of 0.) Have any of you been faced with the choice of treatment, knowing the odds are not greatly in your favor and risking putting your family through suffering, but chose to do it anyway? (Hopefully with favorable outcomes,) He asked me to pose this question to you all. Thank you!
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