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Viewing 15 posts - 1 through 15 (of 21 total)
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  • in reply to: Pain in tumor area.. Side effect of Zelboraf or..? #68675
    charissa1969
    Participant

    Hi, Lin.

    I am not familiar with Zelboraf and its side effects; hopefully, Catherine or someone else more knowledgeable than me will post soon. Regardless, I would report it to your doctor and see what he/she has to say. I hope your mother will be doing better soon.

    Charissa

    in reply to: A Special Message to the MIF Family #68086
    charissa1969
    Participant

    I am so sorry to hear about your husband’s illness, Catherine. You and this forum were a godsend when I was first diagnosed; I will never be able to repay your kindness and support, but I will be praying for your family as you travel this new road.

    Charissa

    in reply to: lymph node removal yes or no #66349
    charissa1969
    Participant

    Hi, Dave.

    I was diagnosed Stage IIIa after a WLE on my calf and SNB of my left groin in August 2013. My surgeon recommended a complete LND just 2 weeks after my first surgery. I am so glad you are taking a step back and considering all the options before making a decision. Catherine (from this board) recommended asking about a partial dissection since mine was also a microscopic metastasis, but my surgeon did not agree so I proceeded with the full LND. There were no more nodes with cancer and I have chosen to get scans twice a year and see my derm every 3 months. I have had no recurrence (I am now 18 months out) and I feel good overall. I do have lymphedema in my leg that I manage with a compression garment. I am a dancer and have been able to return to dancing, just not as frequently. My leg often aches and there are areas that are still numb. I think looking back, I would have liked the option of a partial dissection, but barring that, I am glad I had the LND for piece of mind. I will be glad to give more detail and answer any questions you have from my experience if you want to email me privately at jcsampson@twc.com.

    Charissa

    in reply to: 1 Year NED!!! Thank you MIF!!! #65032
    charissa1969
    Participant

    You’re awesome, Matt! So grateful for the good news.

    Charissa

    in reply to: which sunscreens work best #64442
    charissa1969
    Participant

    I’ve been wondering if the compression stocking I wear on my leg is enough protection from the sun or if I should put on sunscreen as well. It is already so difficult to get the stocking on without something sticky on my leg. ;)

    in reply to: 1 week post-lymphadenectomy experience/tips #62723
    charissa1969
    Participant

    Hi, Madeleine,

    I am so glad you found my post helpful. I can certainly empathize with your concerns about the surgery and beyond. I also mourned the thought of giving up my active lifestyle, primarily clogging and hiking, like you. What I wish someone had told me (though I didn’t express all of my worries at the time) was that you can’t think that far ahead. To be honest, I wish I had been more prepared for dealing with the drain that will be in for +/- 4 weeks. It was uncomfortable and inconvenient, and it messed with my mind more than it should have because I was convinced that things would not get much better. I moved as much as I could each day and was very proud to make a mile walk about 3 weeks after surgery. But nothing compared to getting the drain out. After that point, I really took off, healing-wise. But then a month after the drain was out, I developed lymphedema and I had to learn how to manage that. It was a setback and something I had tried really hard to avoid (by exercising everyday, drinking lots of water, keeping my leg elevated, etc.). But then, after a while, that was OK, too. I just recently found my “sweet zone” which was switching from a 20-30 mm compression stocking to 30-40 mm. Even though I have to wear it all day every day, my legs are the same size again. And as for doing the things I love, I started clogging again about 8 weeks after surgery, and while I can’t last as long as I used to, I’m grateful for being able to still enjoy it. I’ve been on a couple of hikes, but I haven’t attempted a mountain…yet. ;) The biggest difference I deal with now is the amount of time I can sit with my knee bent instead of being straight out. After 20 minutes, I am still very uncomfortable. It makes driving difficult and long trips are probably out for good for me. But on the bright side, it keeps me up and moving around. I’ve found a rebounder (mini trampoline) helps when my leg is feeling heavy and achy which is just something I deal with. Also numbness in my thigh. But all in all, I feel extremely grateful for where I am now. I read on this forum every day and have great admiration for the Stage 4 folks who deal with their illness with an amazing amount of grace. Please email me personally with any additional questions you have. I wish you the very best. God bless you.

    Charissa

    jcsampson@twc.com

    in reply to: Dacarbazine chemotherapy #63946
    charissa1969
    Participant

    This was the same trial offered to me after I was diagnosed stage 3. I remember Dr. Chesney told me there were only mild side effects. I chose not to do it after reading on this forum and talking with my surgeon (Dr. McMasters).

    Charissa

    in reply to: Stage 4, out of the blue #63883
    charissa1969
    Participant

    Hey, Jim.

    No suggestions, just wanted you to know how sorry I am that your dad is going through this. Continue to post here; when I was first diagnosed, I found it so helpful to talk things out with people who understand.

    Charissa

    in reply to: not sure what to think… #63726
    charissa1969
    Participant

    Just wanted to let you know that my follow-up MRI came back clean so I guess my lease in NEDland is extended for a bit. I appreciate all the encouragement while I was waiting. Thank you for your kind note, Anne. I think of you every day.

    Charissa

    in reply to: not sure what to think… #63724
    charissa1969
    Participant

    Thank you, Linny and Catherine, for your kind encouragement. I’ve done a fair job of putting it out of my mind for the moment; it just seems like it takes forever to get these things scheduled. I’ll post again when I know more.

    in reply to: Recurrence after a IIIb diagnosis 2013; what next? #63435
    charissa1969
    Participant

    Hi, Anne.

    Matt emailed me and told me about your recurrence, and I wanted you to know how sorry I am to hear it. I don’t understand why you were moved to Stage IV, but I imagine it is very overwhelming. How are you doing now? Please know that you are in my thoughts. You were there for me when I needed encouragement and hope; please let me know if I can do anything for you.

    Charissa

    in reply to: Diagnosed stage 2…..need to hear positive things!! #63292
    charissa1969
    Participant

    Hi, there.

    So sorry you are going through this, especially with young children. I was diagnosed in July, had a WLE and SNB the middle of August. 1 node was positive so a full node dissection at the end of August so am currently 3a. I think it is a good idea to have the scans, but if all is well as it most likely will be, I think you can do as my GP said to me – turn the page and move on. Yes, it will be in the back of your mind, but I can say being 4 months in, that I don’t worry about tomorrow. I have a lot to remind me of what’s happened (wearing a compression stocking, wooden-feeling leg, etc) and will have frequent appointments and scans the next few years, but I plan to be around to see my 3 kiddos grow up. It really does get easier the further away from the original diagnosis you go. And if read other posts, even in the stage 3 forum, you see people who have been on for many years. Wishing you the best.

    Charissa

    in reply to: Just got results #63216
    charissa1969
    Participant

    Hi, Bradley.

    I’m so sorry about the results of your biopsy. I was diagnosed this past July and so the memories of the initial shock and feelings of unreality are very fresh. The next step after diagnosis is to meet with a surgeon to schedule a WLE (wide local excision) around the area of the biopsy. Since your melanoma is so shallow, I don’t know if a SNB (sentinel node biopsy) would be recommended, but Catherine will know. I do know that you want to find a surgeon who is familiar with melanoma. Again, Catherine can help you there as well. You will be in my prayers.

    Charissa

    in reply to: New Visitor-What to do? #62815
    charissa1969
    Participant

    Hi, Don.

    I am so sorry you are having to go through this. I completely understand how overwhelming the decisions can be. I was diagnosed in July of this year and am currently at stage 3a as well after a WLE, SNB, and a groin dissection. I was offered a combination of DTIC and IL-2 through the Brown Cancer Center in Louisville, KY. It had shown some promise to reduce the risk of recurrence but I don’t think they have shown that it affects overall survival. I decided to decline and to maintain regular derm appts. and scans. I agree with Catherine that this is not a “do nothing” approach; it was the best decision for me and my family, and as I continue to heal and get back to my “normal” life, I am still confident in my decision. I did not consider interferon at all; I had read on this forum and other blogs about its toxicity and mixed results. When you have a chance, let us know how you are doing and what you decide.

    Blessings, Charissa

    in reply to: new palpable node in groin #62823
    charissa1969
    Participant

    Dear Anne,

    Since I am a newer member of the melanoma club than you are, I do not have any experience to share with you that would be helpful. But I wanted you to know that I am thinking of you and praying for a good report from the doctor. When I first posted on this forum, you took time to write and encourage me to stay positive and to share your experience. This was more helpful than I can possible express in words, and I am so grateful for you.

    Many blessings, Charissa

Viewing 15 posts - 1 through 15 (of 21 total)