Scared out of my mind: Hi. First off... - Young Adults with...

Young Adults with Melanoma

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Scared out of my mind

lovestotravel84
lovestotravel84

Hi. First off, nice to meet everyone. This is my first post. Around this time last year, my mom went to her pulmonologist and when he was checking her lungs he noticed a mole on her back. He suggested she get that checked because it didn't look right. She made an appointment with the dermatologist and he examined it and said we can do 2 things. Leave it as it and monitor it every 3 months or remove it. My mom has been through a lot medically. In 1992, she was diagnosed with Hodgkin's lymphoma and has been in remission ever since, she had a splenectomy, both knees operated on, open heart surgery, stent and some other stuff. Knowing all this, I said why don't we leave it as is and continue to monitor it. We went back 3 months later and there was no change. We went 3 months after that and there was no change. Then 3 months after that it started to grow and the doctor said it needs to come out. He took it out and sent it for a biopsy. Last week she gets a call from the doctor that she needs to come in immediately. We go in and he says it's melanoma and that she needs to go a surgical oncologist. We have an appointment for this Friday. I am a nervous wreck. I've been doing a lot of research online and I don't like what I see. I'm freaking out and can't sleep. I can't concentrate. All that I keep thinking is that it spread. She was just at her oncologist that she sees from the cancer the first time around. Everything was fine. He felt her glands and did a breast exam as well as blood work. The blood work shows anemia, but her LDH is within range. In my research, they can tell if melanoma spread by the LDH levels. She goes to all her doctors regularly. I'm not sure what to think. The mole is out, so doesn't that mean it can't spread. Thanks so much for reading. It feels good to get that out. I'm also here if anyone needs to talk. Thanks again. My prayers are with everyone and their families

9 Replies

Hi!

I am a stage 4 warrior. I want to assure you there is HOPE! Melanoma is a very aggressive cancer so it is important to get your mom to a melanoma specialist not just a general oncologist. She does need to have the excision because the melanoma can spread into the deeper tissue, lymph nodes and blood. Unfortunately, blood work is not really accurate for melanoma. Yes, you can see if the LDH rises but mine kind of jumps around.

Once your mom has the WLE you will know more. The surgeon will need to get clear margins. Depending on how deep the melanoma is will determine what happens next. I will tell you that I have had multiple metastasis as well as brain mets, but...I have been 4 years and 9 months with No Evidence of Disease! There is hope!!

Hi Robyn, my name is Moriah. Even just your post has given me hope! I'm so happy you have been 4 years and 9 months NED!!! I'm wishing you continued health!

Moriah, how is your mom doing? I’m sure this whole thing is daunting. Keep your chin up and stay strong!

Hi Robyn, sorry to make it confusing with the original post. It's actually me who has melanoma. I'm 26. 3 years ago I had a mole removed that they said wasn't even stage 1 yet and they got clear margins, but last year I had the lymphnodes in my groin removed (only the sentinel node tested positive for melanoma). Now last month, I've been finding little lumps and bumps and having them removed (also melanomas). So instead of freaking out and futurizing to worst case scenarios I'm trying to do positive things for my immune system and body to fight this. I love that you are a stage IV warrior (I mean, not that you had to go through all that but that you are here and living boldly and helping others-- truly amazing!). It gives me a lot of hope and I appreciate you! I am currently reducing all sugars and grains, reducing stress, seeing counselors, meditating and doing positive visualizations. They had me do immunotherapy, but I had to stop after 4 treatments because of my liver. I might be trying something new soon but I don't even know the name.

I've read from others I should look into vitamin D supplements. I may also try to find a melanoma specialist. Did you see a specialist? If so, how did you decide which one? Sorry for the long-winded comment. I just wanted to put it out there and I'm anxious to learn from others with more wisdom and experience. Thank you, Robyn!

I’m so sorry I was confused! You sound a lot like me though. I cut out sugars and grains. I use essential oils, visualization and I saw a great therapist. I kept as active as I could and yes! Vitamin D is huge. Try some probiotics too. I have learned a lot. Our immune system starts in our gut so it needs to be healthy. That’s my thinking.

You definitely have to find a melanoma specialist! Melanoma is a different cancer and the oncologist need to be very experienced in melanoma to treat it properly. You can search online for specialists in your area or ask your oncologist to give you some names.

I am going on on October 9 for my next brain MRI, PET scan and labs! I do hope and pray for continued NED! Hope you are well and take care.

Thank you so much! I'm working on getting a referral to a specialist in LA or Salt Lake. Wishing you positive thoughts and clear scans next week! You've totally got this :)

Great!

There is so much hope! I’m excited to hear Robyn’s story too, almost 5 years NED is amazing! I’m also a survivor, just reaching my 1 year mark, also was stage 4. I also cut out grains, sugars of all kind, and animal protein. I did energy work, meditation, visualization and yoga to help support my body and keep me sane. I saw a specialist at the university hospital in Denver, but honestly, I got the same treatment that I would have had if I’d done my treatment through Kaiser. I saw in one of the other posts though that you were looking into a specialist in LA? I have a friend who was also diagnosed at stage 4 and she saw Dr Ribas somewhere in LA. She’s NED now too and doing well. Like I said, SOOO much hope these days for melanoma survivors. Keep up with the diet, I’ve had some autoimmune issues since completing treatment but the diet really has helped my body bounce back and keeps the autoimmune stuff under control.

Thank you so much for your response! Congratulations on your 1 year NED! I'm over the moon for you and happy there is so much hope!! I think with all the great changes you've made, you'll be through with it forever! Did you do immunotherapy treatments then? I did 4 treatments but had to discontinue due to autoimmune hepatitis.

I'm scheduled to see Dr. Peter Boasberg next week in LA but I will look into Dr. Ribas now too! Thank you!

Have you used any wholistic therapies in conjunction with the standard medical treatments?

Take care!

Moriah

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