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islandgirls

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islandgirls last won the day on February 24

islandgirls had the most liked content!

About islandgirls

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

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  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
  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 s
  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 fret
  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, yad
  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 nurs
  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
  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 “n
  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
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