A blog about us…and journey with Melanoma

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Still going strong

Still going strong

We’re sorry for not updating you all more often. The beautiful, tedious “normalcy” of every day life has taken over once again…almost 5 years later. We know we are lucky and we appreciate every comment on this blog. We will not take this state for granted …as it comes with the beauty of health. See for yourself…look at Mike’s guns.

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36 responses

  1. Jim

    Hi EM and Mike…..thank you for this update. I myself was just diagnosed, had one “hot” lymph node, had them all taken out, my malignancy was term superficial….your story inspired me to “believe”…Thank you, thank you, thank you….I’ll start working my my guns…LOL….Jim.

    April 25, 2014 at 3:53 am

    • Hi Jim – nice to meet you and dont stop believin’!! Let us know if you have any questions. Mike joined the gym after diagnosis and it helps him deal with stress. Highly recommend it! Especially if you had lymph node removal because scar tissue will be present. Take care!!

      April 25, 2014 at 4:33 pm

      • Jim

        Hi Guys….thank you…..I was an exercise junkie all my life, and will return, have returned to the gym….congrats to you both….congrats to you Mike…..

        Jim

        April 27, 2014 at 7:08 am

      • Greg

        Hey EM – How is Michael doing? His story is so similar to my wife’s in every way. She had her CLND in June and we just had her first scans and waiting results so we are dealing with our first scanxiety. Michael’s story has been a big inspiration to us. I pray we are as fortunate as you guys have been.

        December 17, 2014 at 10:10 pm

      • Hi there – Sorry it is scan time and I know it is SUPER stressful. Remember at scan time that if there is ever a recurrence there are some amazing new drugs approved by the FDA. Mike is doing very well!! Healthy and happy! He isnt the only one who has done well this long at stage 3a. I will post to update the blog and let you all know. Thanks for the reminder!

        December 18, 2014 at 1:37 am

  2. Shirley Zaremba

    Hi Mike and Emily,
    Its awesome hearing from you. It has been a long time, but I understand because I am guilty of not communicating as well.
    I will hit my 8 yr mark this summer. I will be 5 yrs out from my recur in August.
    Did have blood clots under my arm and in subclavian vein 3 yrs ago. That was scary. They never found a cause. I now have lymphedema in that arm, along with the leg from the groin dissection. So…. the entire left side now matches.
    But… who is complaining? I am here and enjoying life.
    Your kids must be getting big. So happy to hear from you. Even happier Mike is doing well.
    Shirley Z

    April 25, 2014 at 12:24 pm

    • Shirley it is so great to hear from you! I cant beleive it has been 5 years. You are so inspirational. So happy you are enjoying life..and yes are kids are pre-teens and hormonal and BIG! XOXO Emily

      April 25, 2014 at 4:35 pm

  3. Judi Wood

    Those be Big Boy Guns!

    April 25, 2014 at 3:32 pm

  4. I just found your blog. I’m stage 3B Melanoma. Diagnosed last November, groin dissection in December (no sign of melanoma beyond the initial node). I’m on a “wait and see” program now.

    June 9, 2014 at 6:37 pm

  5. Greg

    Hey EM – Hope you guys are still doing well. Mike and my wife’s story are very similar. I’m just curious. After Mike’s lymph node surgery; has he had any atypical moles removed when he has his skin checks? My wife has had a few (non-Melanoma) atypical moles removed since her lymphdectomy. Just comparing notes here. Not sure what that means long term. Thanks for your help as always

    October 27, 2015 at 8:49 pm

    • No he has had other types of pre skin cancer things but he recently went to Stanford for his skin check and they said he really doesn’t have that many moles which is a good sign. Not sure why… but having multiple melanomas isn’t very common. I think what it is …the more atypical moles the higher the chance of melanoma.

      October 29, 2015 at 4:03 pm

      • Greg

        Thanks EM – Has he ever had any new growths that turned out to be benign? So far she has had five spots removed and all have been benign. Problem is, I don’t know if these are pre-existing (spots, moles, etc.) or new ones.

        October 29, 2015 at 4:47 pm

      • I think he might have had 2 removed after his initial diagnosis ..since they are going to the doc much more they will find more stuff

        October 30, 2015 at 3:56 pm

  6. Shirley Zaremba

    Hi Em & Mike .
    Was thinking about you guys the other day. So glad Mike is still doing well.
    Things are going good on this end also. 9 yrs out from the stage 3C diagnosis and 6 yrs out from the recur.
    We are expecting 2 new grandbabies. One in Feb and the other in March. Exciting times ahead.
    It seems so long ago that our lives were turned upside down.
    Continued best wishes to your family.
    Shirley

    October 27, 2015 at 11:03 pm

    • So good to hear from you Shirley! Congrats on the new grandchildren! It made my day seeing your note. All is well over here and we are both busy working. Mike and I were just so happy to hear that Yervoy was approved for stage 3 yesterday.

      October 29, 2015 at 3:58 pm

  7. Melissa

    Is mike going to take Yervoy? Doc wont to talk to my husband that is 2b about Yervoy treatment

    November 21, 2015 at 8:48 pm

    • No Mike cant get Yervoy… it is only for people who have just had the initial mole removal surgery and are stage 3 (adjuvant therapy).

      November 21, 2015 at 9:40 pm

  8. Melissa

    I didnt know it was for stage 2 but doc and would like to take to my husband about yervoy do u know anything about this treatment?

    November 21, 2015 at 10:35 pm

  9. robert

    Just found this great blog and have just been diagnosed this week with malignant melanoma on my back, a 3.6 mm tumor / mole. have talked to one surgeon so far.
    He is describing a 7 inch long incision that is 2 1/2 inches wide, I don’t understand this!!
    If the incision is 2 1/2 in wide how is it closed and stitched up?
    Thanks you so much for your pictures, my mole/tumor is in same place on back as yours only left side.
    I’m assuming an incision and tissue removal that large takes months to heal, is that correct??
    Glad you are doing so well after so many years, thank you so much for this blog – robert

    November 18, 2016 at 5:52 am

    • hi Robert ..sorry you are going through this. With melanoma you need to have a “wide excision” so they take out a huge amount to ensure the cancer is gone. It did not take months to heal with my husband..more like a month. They put in a drain to help the healing as well. His scar is really not that noticeable now but it is big. We call it a shark bite. They will probably test your lymph nodes as well when you have surgery. Please let me know how surgery goes! Take care

      November 19, 2016 at 12:08 pm

      • robert

        Thanks so much for the information and writing. I will stay in touch

        November 20, 2016 at 8:01 pm

  10. Shirley Zaremba

    Hi Em,
    Always happy when an email pops up because it reminds me that I need to check in. I hit my 10 yr mark at stage 3C in July. Still going strong.
    I have developed some circulation issues on the side where my toe was amputated and the groin dissection. Raynauds in that foot and toes only within the past year. They have concluded that its probably damage from all the surgeries.
    Other than that just enjoying life and anxiously waiting for my husband to retire in 2 1/2 yrs.
    So happy to hear Mike is still doing well.
    Have a Blessed and happy holdiay season and the best to you and Mike in the coming year.
    Hugs, Shirley Z

    November 20, 2016 at 9:41 pm

    • Hi Shirley! So good to hear from you. So happy that you are 10 years and strong. I also have reynauds syndrome in my hands and feet! I get it bad during the change of seasons and they say it is autoimmune ? Mike is ordering me some new gloves as I write this. Hugs to you please stay in touch !!

      November 29, 2016 at 4:36 am

      • Shirley Zaremba

        Hi Em,
        Yes, my Raynauds is horrible when it gets cold. My bloodwork shows my isn’t due to an underlying autoimmune issue. I guess thats one thing to be thankful for.
        Have a wonderful Christmas and a Blessed and heakthy New Year.
        Hugs, Shirley

        November 29, 2016 at 11:13 am

    • robert

      hello just hearing the words, stage 3c and still going strong after 10 yrs makes me feel better tonite, i will find out at end of next week my stage, some surgery on monday around original lesion on my back and a sentinel node biopsy, was diagnosed a cple days before thanksgiving this year, all of this is new for me, putting one foot in front of the other at the moment, thanks for posting all your experiences robert

      December 3, 2016 at 5:08 am

      • Shirley Zaremba

        Hi Robert,
        This is a very scary time for you. I remember it well. One day at a time and one foot in front of the other is good advice. This is such an overwhelming time. Best wishes to you. Please post here again so we know how you are doing.
        Shirley

        December 3, 2016 at 2:28 pm

  11. robert

    Hello all,

    Just an update. Am about to have several nodes removed under left arm. Sentinel node biopsy found one clear node and one with some cancer cells. Had Pet-Ct scan recently and nothing found past nodes.

    So I have a similar “shark bite” as mike and in about the same place on lower back.

    About how long does the drain have to stay in after node removal surgery? Will update stage as to whether 3 a,b or c soon. Also meeting with oncologist after nodes are checked in lab
    thx for info robert

    January 5, 2017 at 3:14 am

    • Robert, you and Mike are melanoma twins. Mike had the (Jackson Pratt) drains from the lymph node removal in place for less than a month. It’s all about how you heal and
      How much drains ..his doc was very aggressive with this surgery and removed 20 nodes. The biggest thing was nerve damage from the surgery. He still has a very small spot on his tricep that he can’t feel. Stretch your arms as much as yoi can. There are these spider web scar tissues that happen after surgery for a short time that stretching will help. Let us know how it goes!

      January 5, 2017 at 3:51 am

      • Robert

        Thanks so much for the information again, I will stretch arms. Surgeon said to expect some numbness possibly. Surgery on jan 13th

        January 5, 2017 at 11:00 am

    • Shirley Zaremba

      Hi Robert,
      My drains were in a couple weeks, but they were pulled before they should have been because my Dr thought they were getting infected. A lot of it will depend on how much is still draining. It’s been 10 yrs and things may have changed since then but you have to keep track of how much you are draining each day. I believe it has to be under a certain amount befire they should be pulled. I had a groin dissection and was draining over the desired amount when they were pulled but as I said he was fearful of infection. I had to had mine drained a couple times afterwards with a needle. I do suffer from lymphedema. I am hoping and praying that won’t be an issue for you. Not everyone develops it.
      Good luck to you. I’ll be praying all goes well. I am stage 3C but I had a matted cluster in my groin that I could actually feel.
      Shirley

      January 5, 2017 at 12:32 pm

      • Robert

        Thanks so much Shirley, it helps me so much to hear from you and others on this blog. I had never been sick or in a hospital before this started in Nov 2016 except having tonsils out at 3 yrs old lol, 65 yrs now.

        I think I will be 3 B or 3 C so it helps alot to hear from your and Ema. I live in Tulsa Okla but have lived in Houston for many years. I don’t really want to go to MD Anderson unless I have to, its such a huge medical complex in that part of town. I may go to Univ Texas-Southwestern in Dallas Tx however but thats a little time away. I tend to get ahead of myself with all this.

        Is there anything you can do to help avoid lymphedema? Thx so much and I’m glad you are doing so well along with all the other survivors here

        robert

        January 5, 2017 at 3:32 pm

      • Shirley Zaremba

        Hi Robert,
        Maybe you will be lucky like Mike and not develop the lymphedema. Its hard when its in your leg because you have to walk. With your LND being in your arm I’m hoping it will be different. If you do develop it, the best thing to do is get into therapy. That helped me a lot. I went 4 days a week for a month and was taught how to do it at home. It involves gentle movement of the lymph fluid and wrapping with special bandages.
        I agree with Em about the numbness. I have a spot in my groin that is still numb and its been 10 yrs.
        Make sure you don’t overdo after surgery. I tend to be pretty hyper so that was real hard for me.
        Best of Luck to you!
        Shirley

        January 5, 2017 at 9:06 pm

      • robert

        Thanks again for the helpful information, my niece is a phys therapist so hopefully she can help if problems come up with the fluid. Good to know about not overdoing it also after surgery, I tend to want to do too much to get going again thx again

        January 6, 2017 at 3:20 pm

  12. Robert

    Just an update, just had first treatment with Yervoy a little while ago. Feeling ok so far. I am stage 3A, had one node out of 16 positive. Luckily Bristol Meyers Squibb is providing the Yervoy for free to my doctor and cancer center here in Tulsa OK, I had been worrying about the extremely high cost of these meds.

    My surgeon took out the drain following node removal about a week ago. Some swelling or fluid build up under my arm but watching it pretty closely and notified surgeon about it.

    Such an eye opening experience for me to see so many sick folks, I’d never been in hospital before much less cancer center. I’m so amazed at everyone’s strength here and appreciate all the words of encouragement. all of you are in my thoughts robert

    February 2, 2017 at 2:49 am

    • Shirley Zaremba

      Hi Robert,
      Bet it felt amazing to have those drains removed. My daughter was pregnant with her 1st baby and I remember my husband driving me to the baby shower with my drains in. I rode in the back with my leg propped up on pillows. It was a 2 hr drive but there was no way I was missing it. That beautiful little girl is now 10 yrs old.
      I hope things continue to go well on the yervoy. Praying you will have the same success as Mike and I. There are many of us at stage 3 still going strong. Shirley

      February 2, 2017 at 12:00 pm

      • robert

        hi shirley You’re right I didn’t mind when the surgeon said its time to take out the drain. Glad you were able to go to the baby shower too, I was walking into a Target store and the bulb at the end of my tubing fell out from under my jacket, lol, I just slipped it back out of site and carried on, just another melanoma day. Still not having any side effects from Yervoy other than minor fatigue. Next treatment will be on Feb 23, just taking it a day at a time though. Thx for your support robert

        February 3, 2017 at 9:42 am

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