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    createdone shared an experience

    Loss (Lost loved one): Tyson Chase Leavitt 6.26.82- 8.17.2013 I lost my husband and feel like I don't know what to do now with my life...knowing my life with have to go on without my love

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    • ekdavis81's Avatar
      ekdavis81

      I'm so sorry! Your kind words to me meant so much because your the first person whom I've met that's been where I've been. Most all of my friends have healthy, happy families (which is a blessing!!) but they have difficulty relating to me in a way. Thank you, again!

      over 3 years ago
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    createdone asked a questionSkin Cancer - Melanoma

    Stage IV melanoma. Zelboraf didn't work. IL2 almost killed him. Now we are going to try Avastin and Temodar together...what to except. Pleas

    • carm's Avatar
      carm

      Createdone,
      So sorry to hear that Zelboraf did not help. Temodar is a long established drug. In chemotherapy, it is an alkalayting agent that works on the resting phase of the cell cycle to try and stop it from proliferating. Avastin is not a chemotherapy, it is a biotherapy. It does not destroy cells, it blocks the receptor site on the tumor that gives off a message that it needs a blood supply. This starves the tumor. Temodar has the usual side effects like nausea and is best taken on an empty stomach. Avastin will raise blood pressure and kidney function should be monitored but the infusion only takes about 20-30 minutes and maybe an occasional muscle ache but no hair loss or other side effects that you would see with a chemo. I think he will do quite well. Best of luck to you both, Carm RN.

      over 4 years ago
    • StrongSteph's Avatar
      StrongSteph

      I took temodar as a part of the biochemotherapy treatment. Being a chemotherapy drug it was a bit hard to stomach. (I was on a total of 5 drugs). Are you able to try Yervoy aka ipilimumad? SO sorry to hear that! I had about IL-2 and it was very hard for sure.

      over 4 years ago
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    Oh No: Zelboraf didn't work. More tumors including brain...

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    createdone wrote on melanomamama's wall

    Thank you for sharing...this is indeed a journey through a valley of shadows.Any advice for a caregiver caring for a stage 4 melanoma love. We are to be wed in September. We found out on Dec 26th that multiple organs have tumors including the brain and a couple lymph nodes. We tried IL2 once..didn't go well. Capillary leak syndrome happened to the tumors in his lungs and he ended up in the CIU on a ventilator. Now we are trying Zelboraf. He has a unique mutation. One that our speaclist has never seen in melanoma before. Don't even know if Z will work. Trying everyday to remain positive for him and for me...

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    • melanomamama's Avatar
      melanomamama

      I too had IL-2 treatments that landed me in the ICU, but it was during my second round of treatments, so they considered that I got a sufficient dose. Then, the IL-2 seemed not to work until they also radiated my inoperable chest tumor. My melanoma oncologist is also a researcher (at Providence Cancer Center in Portland, Oregon) and he says the combination of IL-2 (an immunotherapy agent) with radiation enhances the effects of each. I was lucky enough to go for 3 years without recurrence, until a brain tumor appeared last year. So, if your fiance's IL-2 occurred recently, it might be worth asking his oncologist if any tumors would benefit from radiation. I received another combination of an immunotherapy drug (Yervoy) and radiation (targeted gamma knife brain radiation) last spring, and I seem to be doing well again, without recurrence so far.
      I have one word of advice for a cancer caregiver. Love. It sounds like you are young, and that makes this journey so much harder. The disruptions of work and cash flow, the lack of ability to plan for the future, and the patient's need to rely on you, make the relationship far different from one you had dreamed of. But there is an intensity of intimacy that comes from sharing closely in another's life-threatening health struggles. I was my mother's caregiver for the last year of her life, and I consider it to have been one of the best years of my life. Luckily I did not have cancer treatments of my own during that year, and I was able to pour myself into all the details of caregiving a 92 year old who was on full-time oxygen, while enjoying her bright spirit up until the last moment of her life. If you can find a support group in your area for cancer caregivers, it could be worth fitting that into your busy schedule, because it will give you a block of time to attend to your own needs during this rollercoaster existence.
      One specific piece of advice you may already know about. Learning to listen to the patient no matter what his state of mind is one of the best gifts you could give him. He'll need in you not only a repository of hope, but a safe place to express doubts and fears, and if you can be a calm and silent witness to his deepest feelings, that is authentic love.
      And don't easily give up on wedding plans. I spent money one spring on a season ski pass for the following winter, because by buying it early I got a steep discount. It seemed foolish at the time, because I didn't expect to live until the next winter, but the professional leader of my cancer support group says that making plans sends signals to our cells that we expect to live, so our cells had better get on board with this living business. That was three seasons ago, and I'm still downhill skiing!
      I have more to say in my book, Melanoma Mama: On Life, Death, and Tent Camping. You can read the first two chapter for free on either my website or on Amazon.com. It is available as a trade paperback or as an ebook. See www.melanomamama.com.
      Constance Emerson Crooker

      over 4 years ago
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