I have been SOOOOO bad on updating this blog. I am so sorry, but also, I just have nothing new to write about! Steve went to MD Anderson for labs and scans in June and they were clear!! That makes SEVEN years clear! Other than that, we really dont have too much new to blog about. Our oldest daughter Sadie was a senior this past school year. She missed out on lots of senior year traditions, but in the big picture, everything was still ok. Steve saw her graduate!! He wasnt even supposed to see her get out of middle school! Life is good!!! She is moving on to college in just a few weeks. My momma heart is hurting, but I am so proud!
I still get so many messages from those that are
newly diagnosed and looking for inspiration. If you are here and looking for inspiration, I am SO glad you found us! Keep in mind that melanoma treatments are improving everyday, and try to keep a positive attitude! I KNOW that is so hard! But try! You can do it!
This is encouraging. My cousin was diagnosed and has three young kids who need her. It has certainly changed our family's habits and we are more careful than ever to use sun screen now.
ReplyDeleteYes, sunscreen use is so very important. I am sorry to hear about your cousin. I hope she is able to find a great treatment that works for her. Hang in there!
DeleteMy mom is having the same metastatic melanoma , my mom's oncologist wants to start immunotherapy for the treatment.(please if possible please tell about the do's and don'ts during the treatment) and also the diet chart you followed. It will be very helpful for my mom.
ReplyDeleteMail id-dheeraj.shrivas3@gmail.com
Hello! I am just seeing this comment, I'm sorry! I hope your mom is receiving treatment and doing well. My husband did well with immunotherapy treatments and did not follow a specific diet. Let me know how your mom is doing!
DeleteI really hope and pray that Steve is still in remission. God Bless y’all, and God Bless
ReplyDeleteI meant to say, praying for y’all and God Bless. Sorry for the mix up
DeleteYes! He's still no evidence of disease! Thank you for checking. He'll go back in the summertime for his annual scans. Have a good evening!
DeleteThank you for sharing your story it is so inspiring. We are rejoicing with you that your husband still is an NED. This is a very tough battle to endure but it sounds like you guys are setting the bar. Thank you for sharing. My husband has stage for melanoma which was diagnosed in 2019. He had gone through immunotherapy as well as oral chemotherapy because his is BRAF positive. He has had no evidence of disease for over a year until most recently he developed a brain tumor. The tumor was radiated and the doctors are pleasantly surprised that it is almost gone. Your story is very inspiring and we were just wondering if your husband takes any daily treatments either oral chemo and immunotherapy infusions or anything like that at all.
ReplyDeleteI am afraid that I won’t be able to find this again, it is my first post on a blog. My email is allison.glasser@yahoo.com
DeleteI'm glad to hear your husband is responding well to treatment! To answer your question, no, my husband doesn't take any treatments. He's been treatment free since 2013-ish?
DeleteHello I was Diagnose with Ocular melanoma in 2004... I had surgery done on the eye to shrink the tumor.lost my site in my left eye....13years later it spread to my lung....I had a left lob surgery to remove the tumor and took a piece of my left lung...I have been getting Immuno therapy..treatment was every 4weeks...I had some side effects..But kept going. Nothing as bad as most people with cancer....Still doing treatment now every 8weeks.the. scans every 3months ....well all I can say is I am still here to speak about it...I feel the treatment is just helping it not to spread...I try to think positive...MY JOURNEY HERE IS NOT FINISHED SO THATS WHY I AM STILL HERE..WE CAN NEVER GIVE UP...
ReplyDeleteYes!!! Never give up! I am glad you are still doing treatment and it seems to be working for you! Hang in there and I would love for you to keep me updated!
ReplyDeleteMy mom was just diagnosed with stage 4 melanomina, and we all felt hopeless. This blog has gave me some hope, so thank you!
ReplyDeleteI am so sorry to hear of your mom's diagnoses, but so glad to hear the blog has given you some hope. Hang in there! ♡
DeleteI have been surfing the web every day for the past week. 59 yrs old healthiest i have been in decades and then a stage 4 melanoma diagnosis..start Keytruda after Thanksgiving. Your story and UPDATE ( which are hard to find others storys by the way) just made me feel good tonight..thanks
DeleteI'm so sorry to hear of your recent diagnoses. There have been so many new advances in melanoma treatment, so hang in there and keep up the hope! I'm rooting for you!
DeleteOmg! That's Amazing. I just read your story and so touched you guys are doing ok.
ReplyDeleteI'm currently waiting for Biopsy results 🤞🤞
Good luck. I hope your results come back clear!!
DeleteHi! Thank you SO MUCH for sharing your family’s story. It gives me hope. I had a brain hemorrhage on May 29th 2021 that revealed a brain tumor. The subsequent PET SCANS revealed a malignant melanoma on my back. Pet scan showed no spreading to lymph or other organs, so my neurologist and oncologist performed a craniotomy on July 1st to remove the brain tumor. The biopsy revealed that the brain tumor eas also a malignant melanoma. the surgical team did not see any other tumors or infection of healthy tissue. I am now scheduled to discuss treatments with my oncologist next Monday July 19th. Among the treatments being discussed is immune therapy, targeted radiation and chemo. I had NO idea that I even had melanoma and had the brain tumor not triggered the hemorrhage in May things would gone very differently for me. I wouldnever have booked myself in for a PET scan. I was asymptomatic and the melanoma on my back was subcutaneous under my shoulder blade. I am ready for whatever is in store. I am fiercely determined to live!!!! I am «only 52 but in excellent physical shape otherwise, so grateful that eating healthy & exercise have given me a body that can bear all of this. One step at a time. Best wishes to you and your family that your hubby stays NED!!!! Hugs and positivity!!! Cheryl
ReplyDeleteI am sorry to hear about your diagnoses, but so glad that you caught it! With the new treatments out there, you have some great tools in your tool belt! Hang in there and keep me posted!
DeleteMy never ever sick husband was just diagnosed with melanoma of the colon. Extremely rare and a huge shock. It was found during a colonoscopy and the fist sized mass and some lymph nodes have been removed. Can you tell me how you decided where to go for treatment? Are you local to MD Anderson? We are in Florida and have had a consult with a doctor at the University of Miami. Although they treat melanoma there the doctor said he has never seen a case in the colon - it is that rare. Waiting to schedule a PET Scan and sentinel lymph node removal and still waiting on the pathology from the surgery. Just want to feel secure in our choice of treatment facilities.
ReplyDeleteIm so sorry to hear of your husbands diagnoses. That had to come as a huge shock to all of you. To answer your question, yes, we are local to MD Anderson. I would highly suggest your husband see a melanoma specialist. My husband's previous melanoma specialist Dr. Patrick Hwu recently left MD Anderson to go to Moffitt Cancer Center in Tampa, FL. I know several other patients that go there as well and would be our top choice if we were not local to MD Anderson. I would highly look into seeing someone there since you are pretty close. Please keep me posted!
DeleteHello!
ReplyDeleteWhat a wonderful, inspiring and encouraging story!!
I would like to know what kind of drugs they used in your husband’s treatment.
Thank you!
Thanks for checking out our blog! My husband was treated first with biochemo (it didnt rid him of the melanoma, but it did keep everything stable), then Zelboraf (he couldnt tolerate it) and then Yervoy is what finally did the trick!
DeleteThank you so much for your quick reply! How long did he stay on Yervoy and can you tell me about side effects?May God keep blessing your family always
ReplyDeleteHello! I hope you and yours are doing well! My husband did not have any side effects with Yervoy other than minor fatigue and dry, red eyes at times.
ReplyDeleteThank you for sharing your story it very helpful to others. My cousin had melanoma in both lungs and she a smoker. They started her on the immune treatment bit she only had one so far. So Hopfuly it will work.
ReplyDeleteI hope your cousin is doing well with the immunotherapy!
DeleteHello all. Thinking of you.
ReplyDeleteI would like to know..... have they ever found the primary cutaneous/not melanoma on the skin/body of your husband..? If yes, where it was..? I have my husband diagnosed with this condition, lateral cervical lymph node metastasis of melanoma and they didn't find the primary tumor.... we are doing other cat scans now for staging.. thank you very much..
ReplyDeleteNo, they never found a primary for my husband!
DeleteThank you.. I really wanted to answer to this before but..... it is a terrible period.. I don't know any other news yet on my husband's situation.. We are waiting the resultsl of an escissed nevo in the 2017 on the exact place where now there is the lymph node, at that time the nevo was referted as anything dangerous , simple melanocitic congenital nevo!! It is very strange!! Excuse me for my not perfect English..
ReplyDeleteHow is doing your husband?
That is very strange! I hope you guys get good results! Thank you for asking about my husband. He is doing great still!!
DeleteHi Jennifer and Steve! I'm so happy for your family that things are going well. Hopefully Sadie is out in the world living her best. Life truly is precious (unfortunately more so when we know we might lose it). I'm 37 and just got a stage III melanoma diagnosis. I had the local melanoma on a mole removed and a sentinel node biopsy which had a 0.25mm melanoma deposit. I don't know if that's "good" or "bad" or much else which is driving me nuts. I haven't had my consult with an oncologist or any scans yet so I'm hoping the staging doesn't change :| It feels better just saying that and letting you know for some reason. Thanks so much for continuing to be here for us and responding to comments 10 years out. I'm sure, Jennifer, you'd rather not hear about cancer anymore and enjoy the NED life with Steve, but you are still here listening to all the diagnoses and offering support. You are a fantastic human and I hope your own medical issues from 2012 are in check! I live in Victoria, BC, Canada, so if you guys are ever in the neighbourhood fire me a message! All the best, Loren
ReplyDeleteHi Loren! I am sorry for the late response to your comment. Thank you for taking a minute to read our blog! I hope you have gotten more info on your melanoma. How are you doing? Have you started any treatment?
DeleteHi! I was diagnosed with Stage 4 Metastatic Melanoma in May. I take my second immunotherapy treatment tomorrow July 8th. My symptoms were nearly identical to your husbands. I also have tumor in lower left lung and right adrenal gland. Did they radiate your husbands tumors or only use drugs to shrink them? Thank you!
ReplyDeleteI am so sorry to hear about your diagnoses. My husband did not do any radiation. He started with biochemo, it was before immunotherapy had been approved. That did not shrink the tumors. He later had surgery to move the adrenal tumor. Shortly after that he did several rounds of immunotherapy (Yervoy) and that is what finally got rid of all of the melanoma.
DeleteVery inspiring story, glad the whole family stayed strong for your husband. God is so good, but it’s so scary to deal with life crisis. Not sure what’s ahead for my husband. He’s been battling melanoma for years but for the first time it’s hit one of his lymph nodes. He’s already done immunotherapy, he will probably get put back on it. Say a little prayer for us and again thank you for sharing.
ReplyDeleteIm so sorry to hear about your husband! Hopefully the immunotherapy will knock it out! Prayers for you all!
DeleteHello I’m 23 my name is Yulissa , my dad of 44 years old just got diagnosed of Metastic melanoma unfortunately it has spread to his lymph nodes and they are pretty big in size..
ReplyDeletehow soon after your husband started treatment did he go into NO EVIDENCE OF DISEASE??
I really hope you reply , you story of your husband gives me lots of hope god bless you and your family!
I am so sorry to hear about your dads diagnoses. How is he doing? It took about a year after treatments and surgery for my husband to be NED. Hang in there!
DeleteAny words for more encouragement would be amazing im at my worst and staying strong for my dad! Is there anything he also did to help fight it besides treatments ?
ReplyDeleteMy husband didnt do anything besides treatments. Before he started treatments he ate buttered bread with freshly grated garlic and habanero because we read that could help. Do I think that is what helped? No. But he was willing to try anything while he waited for treatments to start.
DeleteHey how r u now?? God bless u all
ReplyDeleteHello! We are doing well! My husband is still free of melanoma. This September made 9 years!
DeleteThis is amazing. God is merciful and good. Btw there’s now evidence to show it’s the lack of sunlight that can cause many cancers. It’s only if u overdo the Sun and get burned a lot can it damage u
DeleteI’m 45, Married and father of three. Diagnosis stage 3b metastatic melanoma 16 months ago. Two surgeries and a nearly a year of Nivo I have my last treatment in two weeks. NED 15 months. After, and indefinitely I’ve been told, I’ll do scans every three months. Moffitt patient.
ReplyDeleteJust asking, how do you transition to mentally and emotionally to a “ watch and wait mentality?”
That is amazing that you are 15 months NED already! The watch and wait mentality was definitely hard to adjust to. It is like suffering from PTSD in a way. You will get used to it eventually. My husband is now on scans only once a year. That was a BIG adjustment! It is terrifying to think if something were to come back you wouldnt know for 3, 6 12, etc months. Hang in there, it is an adjustment, but you will get used to it and youre doing great!
DeleteThankyou for your blog. I so appreciated reading it. My husband has stage 4 metastatic melanoma and is receiving radiation treatment. We will move on to immunotherapy in 2 weeks time. You have given me hope. 🙏
ReplyDeleteHi! Sorry I am just seeing this message. How is your husband doing? How did the radiation work?
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