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Lymphangitic Carcinomatosis - Can anyone relate?

I was just diagnosed on Friday (7/7/23) with suspected lymphangitic spread (lymphangitic carcinomatosis?) to the lungs after being stable with bone only mets for 3.5 years. I'm a little devastated after meeting with my MO. I'm just wondering if there is anyone else out there living with this? At this point I have more questions than answers but am just looking for any kind of hope and tips for living with this new development. Thank you.

Comments

  • novagirl
    novagirl Member Posts: 82

    I have had this for almost 2 years. I’m here for any questions.

  • threetree
    threetree Member Posts: 1,263

    Emac, I can't speak to your new diagnosis in any way, other than to wish you the absolute best of luck in finding helpful treatment.

    Also, not being sure if you'll be on the Verzenio thread anymore (I saw your post about leaving it), I did want to thank you here, so very much for all the help and tips you gave me over these last few months re Verzenio. I'm on my 3rd month and will have scans next Tuesday to see if it's doing anything at all for me, along with the Faslodex. Verzenio was so new to me 3 months ago and I was really scared to start trying it. Your sharing and helpful comments along the way were extremely beneficial for me to read and I will be forever grateful to you for that.

    I will be reading posts here as usual and will continue to look for yours and again am hoping as hard as I can for you to find something treatment wise now that will help you for a long, long time!

  • moderators
    moderators Posts: 7,894

    Hi @emac877,

    We just wanted to send you a hug after hearing this news ❤️. There are surely others here managing this type of diagnosis. Have you introduced yourself on the Mets to Lung thread? Others there may be able to weigh in with their experiences.

    We hope you find some answers and more support soon. Let us know if there's anything we can do to help.

    —The Mods

  • emac877
    emac877 Member Posts: 673

    @novagirl Just having a response is amazing! Thank you so much. I have felt so alone in this. I think I'm still reeling from the diagnosis. I guess my biggest question is how fast it progresses, or doesn't progress. After the first year my bone mets stabilized and stayed that way for 3.5 years so I have lived my life relatively normal. Now I am on a leave from work but am trying to prepare for what's ahead. I have an appointment with a pulmonologist on Tuesday and am concerned I will need O2 as my sats struggle to stay above 92-93% and I have a chronic cough and wheezing. I will be starting Piqray as soon as I get through the insurance hurdles. Just sharing a little of your experience with this would be tremendously helpful to me. Thank you!

  • novagirl
    novagirl Member Posts: 82

    @emac877 I’m sorry you are dealing with LC especially after being stable with bones for 3.5 years. There is hope! I have found that if your treatment works it will contain the LC just like any other spot of cancer in your body. My MO told me LC is not as bad prognosis wise as with other types of cancer. I saw a pulmonologist who told me I didn’t have much time left, it was growing towards my trachea and to go home and watch the US Open. This infuriated my MO because he said that dr didn’t know what he was talking about. I insisted on having lung radiation. My MO did not want me to have that but I did it anyway. It was VERY hard to recover from in the short term my lungs were injured, walking up the stairs was impossible, my trachea inadvertently was in the field of radiation so it hurt to eat or drink. I was really regretting doing it at the time, now I don’t regret it at all. My lungs are much better. That was in 2021. My oxegen levels were terrible with my pleural effusions.
    I hope Piqray works for a long time for you and it’s easy. I got on jardiance with it right out of the gate, took an antihistamine, ate a keto diet-it was by far my favorite drug dude effects wise. I hope it is that way for you too.

  • irishlove
    irishlove Member Posts: 470

    @emac877 Anlotinib was a drug used in non-small cell lung cancer for patients with LC. It showed good efficacy with minimal serious side effects. I hope you ladies find great results with your treatments.