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My sister

PEGGYANNA
Posts: 1
Joined: Mar 2010

My sister has stage iv melanoma that started with a mole on her ankle. The cells got in the blood stream and now has spread to other parts. She will be entering a trial. I think it is with PLX4032, don't really understand all this and would appreciate any info.
Have never delt with a loved one with cancer before, so what's the best way to support her.
The doctor says this is a very agressive cancer and it's posible we might lose her in as little as six months.
Thanking anyone in advane,
Peggyanna

Rocky76
Posts: 18
Joined: Mar 2010

Hi PeggyAnna,
Unfortunately, I don't have information on the trial you mentioned but I have been a caregiver before and I have also had cancer. Here is my experience as both, I hope you'll find it useful. Aside from the fact that the treatment will most likely have some type of side effect(s), it is important to recognize that it is a very emotional experience for both the person with cancer and the people around him or her. It's hard to know what side effects your sister may have once she starts her proram, if any, because everybody reacts differently. It can be anything from changing appetite to challenges with digestion or what you typically hear about. From an emotional perspective, your sister is probably going through a wide range of emotions including disbelief, denial, anger, fear, hope, acceptance; and often times several of these emotions can show up in the same day and can be triggered by things, words or thoughts that you may not be able to wrap your head around. There may be days when your sister will want to talk about what she's going through and other days, she may not want to talk about it at all. There may be days that she appears strong and other days she may break down in front of you. At some point, she may also want to talk about things you may not feel comfortable with or ready for. Whatever the situation, the best ting you can do is to first observe, pay attention to her and support her in any way she asks you to support her or you think she would appreciate. Sometimes it can be as simple as listening. There were a few things that were first hard for me as a caregiver, not sure if you recognize any of these in you too:
1) To do certain things I was asked to do and I really did not want to do or have conversations I did not want to have. But ultimately, I am so glad I did what was asked of me because that experience brought us so much closer and created a level of openness we hadn't had before!
2) To draw the line between the cancer experience and helping live a normal life. Initially, I didn't know how "far" I could or should go. So I listened, paid attention, and what I learned was that while cancer was a big part of our lives, we should not stop living our lives or having fun because of cancer. Cancer should not define us. We tried as much as possible to keep some sense of normalcy and routine in our lives. And ironically, some of the best activities we did were during the time of cancer because we really wanted to do them and because everything was so pure.
3) To know when listening is enough and not feeling like you have to respond. Initially, I wasn't sure if a response was needed and sometimes I had a hard time finding the right thing to say. I didn't know if there was a "right thing". Then I learned that it's ok not to have a response and just listen. It turns out that that's exactly what was needed at that time.
4) To know how to avoid overwhelming the other person or deal when they are or can be overwhelmed. Little things like going to the appointment with your sister if she's open to it. The doctor is probably going to tell her a lot of things and depending on where she is in the process of absorbing everything that's happening, she may want to have somebody there not only for emotional support but also to make sure that everything the doctor says is stored in her mind correctly. (Of course, you don't want her to feel stupid!) Sometimes (it happened to me too) you get so overwhelmed by the information or go into a shock that your brain becomes unable to digest everything that's been said. I don't know if this may or may not be an issue here but it was for me. Or have her ask the doctor to write everything down for her so she can refer back to these notes instead of having to rely on her memory.

I could go on but these were the main takeaways for me based on my past experiences. Not sure if you are aware of the ACS's phone hotline too (1-800-ACS-2345). You or your sister can call it 24/7 should you or she need to talk to somebody other than each other. Because that may be needed too. You can use the hotline to get more information on treatment, etc. or just talk to somebody.

I hope this helps! You and your sister will be in my thoughts.

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