• Hilkei's Avatar

    Hilkei wrote on camperchef's wall

    I don’t know if you’re still active on this site but I have Mantle Cell Lymphoma and live in Hollywood FL, so would like to share experiences if you are up to it.

  • camperchef's Avatar

    camperchef wrote on franhh's wall

    I am a Mantel Cell Survivor. First diagnosed over two years ago. I am 67 years old and was diagnosed with stage 4 just like you. After (R?)CHOP chemo I went into remission. Then I had a stem cell transplant. Now after two years there appears to be a recurrence. We are still investigating to find out what it is. Mantel cell is very stubborn and there is a high likelihood of relapse. I would be happy to answer any questions that you might have.

  • camperchef's Avatar

    camperchef wrote on Jglover323's wall

    Congratulations on your remmission. I was diagnosed about 3 years ago. Have been off treatment for two years after going thru stem cell treatment. I wish you continued success.

  • camperchef's Avatar

    camperchef wrote on Halfpint's wall

    I am a Mantel Cell survivor. Almost 2 years now. I opted for the Stem Cell transplant treatment. Will be going back to my Oncologist for my every 6 month follow up in June. At my last visit he told me about inbrutinib. He spoke of it very highly. Would like to know what side affects are affecting you.

    3 Comments
    • Halfpint's Avatar
      Halfpint

      Congrats on your 2 years. The side effects when taking 4pills which is 560 mg. I broke out in a rash on my whole body and mouth sores. they have put me on 3 pills 420mg and those have subsided. the ones I still have are body aches, tiredness, cramps in legs and feet. I have only been on the med for a month now so we are fine tuning it. I go for my scans next month to see if it is working. You take this everyday and they told me at least a year. I am still working 32 hrs a week.

      over 5 years ago
    • camperchef's Avatar
      camperchef

      Congrats on your stamina to keep going 32 hours a week. I appreciate the insight on the inbrutinib. I hope it all comes together for you and you kick that nasty thing back. Do you mind if I ask you if your health insurance is covering the cost of the meds? Aprox. price?

      over 5 years ago
    • Halfpint's Avatar
      Halfpint

      I don't mind at all. The meds cost about 11,000 a month I am lucky my ins. covers everything but 50.00.

      over 5 years ago
  • camperchef's Avatar

    camperchef shared an experience

    Milestones (Cancer free scan): Just finished my 18 month scans and blood work since my stem cell transplant. Cancer free. This is the second scan in 6 months that has not shown any cancer. Living and loving life. All those prayers certainly worked. The doctors did a good job too.

    2 Comments
    • dan7264's Avatar
      dan7264

      Awesome! Keep it up - love hearing this!

      over 5 years ago
    • Powerofhope's Avatar
      Powerofhope

      Great to hear that!! Keep living and loving life, it will protect you and keep you healthy and feeling good.

      over 5 years ago
  • camperchef's Avatar

    camperchef wrote on SharonG's wall

    I am a Mantel Cell Lymphoma, Stage four, survivor. Diagnosed a year ago last November. Went thru RCHOP Chemo. It did the trick. Liv in Miami FL and went thru Mt. Sinai Hospital. RCHOP did the job for me. After Chemo treatment I decided to go thru Stem Cell Transplant to give me a better chance of keeping away from cancer for a longer time. All has worked. Hearing the words "complete remission" is the sweetest thing ever. Good luck to you. This cancer can be beat.

    1 Comment
    • SharonG's Avatar
      SharonG

      I really needed to hear this . Thanks . I have it quite widespread , so I'd be more than happy to have a stem cell to hopefully "cure" this cancer . I haven't seen much on the web in regards to positive outcomes . So I'm pleased you wrote , and I wish you continued health .

      over 6 years ago