pathology report positive for HPV and cancer but NavDx negative for both

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  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #22

    Hi mcb2005, will be getting Helios from Amazon for sure. Praying we can get him into NW in Chicago 2 hrs from our home. Will find out more tomorrow when I call them. Although our local hospital is a teaching institution/hospital they will not have Proton until 2025.

  • steven59
    steven59 Member Posts: 102 Member
    #23

    my insurance approved proton, but because i had cancer on both sides of my throat I needed the larger cover area offered by photon.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #24

    Swoosh 13, Wow! That’s too bad that they don’t have Proton available. It will definitely make it a little tougher. Here is a 50 percent discount code for the e Helios Product, you’ll have to use it through the company though, MDASL20. Hope everything goes well for you, follow the Doctors instructions as for care and exercises.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #25

    Steven59, that’s great news, sorry it’s on both sides of your neck, it will make it harder to swallow. You’ll have swelling in both the inside and outside of your throat. My right side of my neck is still swollen and I finished in July 3rd. Take care and follow your Doctors instructions on exercises and keep you neck and exposed areas moisturized. Another survivor on here recommended Emu Oil, I used this and alternated with Aquafor. I think the Aquafor did the best for me. I would return home from treatment take my shirt off and apply the Aquafor and just let it soak in. Good luck and don’t let this bother you, keep the end game in sight.

  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #26

    Hi Mcb, just called NWM this morning and have a consult with one of their main Hem/Onc specialists on Aug 8 next week in DT Chicago. They are in the process of getting all his scans so we can get the second opinion. They have Proton at their Warrenville location 30 miles west of Chicago. I’d guess they also have it at the DT hospital and finally trying to find out if their NW Lake Forest Hospital location has Proton as they do treat Head/Neck cancers there. Have a call in to them to find out. That would only be a 1 hour drive from home but even Chicago or Warrenville are 1 hr and 40 minutes if it helps we’ll see. I also appreciate the discount code for the Helios!

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #27

    Also, Swoosh you could consider getting a room for a week at a time to get treatment if you don't want to drive the nearly 4 hours each day. It is an option some folks on here have used.

    Take care, God Bless-Russ

  • steven59
    steven59 Member Posts: 102 Member
    #28

    There's only 40 proton buildings in the united states and if you qualify it would be worth the drive. I've seen people who got the proton and I wasn't a candidate and from what I see the side effect from proton is a mild sunburn while photon treatment is significant. Well worth the drive!

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #29

    Proton is definitely the way to go if it applies to your case and you don't mind the drive or you are lucky enough to be near a proton machine. I did not realize there was now 40 proton machines around the United States. They must be putting them in at a pretty good pace. I remember way back when I looked them up and there were 9 or 10. I just did a quick look up and it says there are actually 42 proton machines available.

    https://www.proton-therapy.org/map/

    Last year one opened in my area at the Ann Barshinger Cancer Center in Lancaster PA, it's late for me but it will help many others.

    Here is a web site that notes 43 proton centers--

    https://protonbob.com/about-proton-therapy/us-proton-centers

    Well, we are certainly Blessed to live in a time of so many treatment options.

    Video--

    The Pros and Cons of Proton Therapy | Mark Scholz, MD | PCRI

    https://www.youtube.com/watch?v=_Z1SbFNSlTs

    Take care, God Bless-Russ

  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #30

    Russ, thx for sharing all the locations for Proton therapy. We’ll find out on 8/8 if my husband will qualify and tomorrow I will be calling our insurance and NW’s financial office to see if our insurance will cover it.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #31

    You’re so welcome. I hope that he can use the Proton Therapy. The one thing that was difficult for us was driving 10 hours and staying 2 months in Houston, but it was worth it. There’s only I believe 94 Proton Centers throughout the world. MD Anderson Cancer Center, where I was treated, just built the one I used in 2014. They are building a second Proton Center behind the e first one. Eventually they will have two beams servicing 8 rooms. The center that I used was going 24/7. They treated patients from 6 am until 12 midnight, then that used the beam for research. I highly recommend this type treatment if possible. Lease feel free to ask me any questions, I will try my best to help you.

  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #32

    Mcb, I was very encouraged today with how well coordinated NWMH has their program. From the first man who took my call and got all of his scan info details, to each of 3 nurses that called and made our trip all on one day on 8/8. The drive is 1-1/2 hrs each way. If I have to quit my 2 day per/week job to go with I will. I can always find another when his treatment is over. Believe it or not, our biggest problem is boarding our 2 dogs if we need to stay over but I think I’m getting ahead of things. We are going to board them for 2 nights next week so we’re not rushed getting down and back. And who knew less than a week ago we knew nothing about Proton or NW’s program.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #33

    I didn’t know about it either, I was doing my own research and found the center. Then I asked my radiation Oncologist about going this route versus traditional radiation and he said yes it could treat my throat cancer, he checked with my insurance and the way approved it. After returning home, I again was doing g research and came across a study that indicated that Proton Therapy was a good choice to treat HPV induced cancer. The study indicated that HPV responded better with the Proton than regular radiation. They both work, I understood the study to indicate that HPV type responded better with the Proton Therapy. This confirmed that I made the right choice. I return September 1 for a CT Scan to make sure it’s gone. We had pets also and it was difficult, luckily we had good neighbors who helped take care of our animals. If I understand it you are in the Chicago area? We lived in Northwest Indiana until 1999 when we moved to West Texas.

  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #34

    Yes we live 35 min south of Milwaukee but no one in WI has Proton yet. I sent a message to his local Rad Onc on Fri early aft to ask about it and still never heard back. They specifically told us to use My Chart to message and their nurses would get back. Our neighbors are literally afraid of our dogs (pit mixes). Rocco age 3 and 85 lbs slept with us last night he’s the biggest baby. Savannah is 11 and having some pain issues so we’ll be boarding her with our vet. At least if he qualifies for the Proton we’re close enough to get back home as often as possible and every single weekend.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #35

    That’s nice, can’t blame your neighbor, I’m retired Federal Law Enforcement and have some run ins with overly aggressive pit bulls. Your husband will really enjoy the weekends off. They give your skin time to heal a little bit. It’s sad that there are so few Proton Centers. Indiana doesn’t have any either, the closest locations are Chicago or St Louis. My cousin used to work for the Milwaukee Police Department, he finally got fed up and left. Hope everything works out for you and your husband.

  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #36

    Thank you so much!

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #37

    mcb, I agree, and I am sure everybody does that we wish there were more Proton Centers available. The reason is the huge cost of just a single room Gantry unit, around $30, 000, 000 thirty million dollars.

    As of 2018, the cost of a single-room particle therapy system is US$40 million, with multi-room systems costing up to US$200 million.

    The University of Wisconsin is set to open one in 2024 at a cost of 438 million dollars for the cancer center and UW Health is paying around $60 million to install the Proton Machine.

    UW Health expects to start treating patients with its proton therapy device in 2024, when construction on its new $438 million cancer treatment center is scheduled to be complete.

    https://www.fiercehealthcare.com/health-tech/uw-health-invests-60m-new-upright-proton-beam-cancer-therapy-new-approach-treating

    Here is another comment I found on the cost of Proton--

    “You can buy a regular, commercial radiation machine for about $2 million and spend maybe another million to get it set up the way you want it, so a $3 million investment,” Shih added. “[Costs vary widely for proton centers], but ours was $50 million. It's all about that investment.”Aug 25, 2021

    From this article--

    https://www.healio.com/news/hematology-oncology/20210818/amid-questions-about-cost-and-access-proton-therapy-set-for-big-moment-of-change


    I am praying for successful treatment for everyone and clear scans ahead.

    Take care, God Bless-Russ

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  • mcb2005
    mcb2005 Member Posts: 16 Member
    #38

    Wow! I had no idea they cost that much. To be honest, I wish the Government would step in and setup at least one Proton Center in each state.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #39
    https://csn.cancer.org/discussion/comment/1707705#Comment_1707705

    Thanks

  • Swoosh13
    Swoosh13 Member Posts: 82 Member
    #40

    Yes Russ I read about UW Health’s unit coming in 2024 and apparently it’s a “stand-up” unit. We live 60 min from Madison and my son also lives there, but alas 2024 is too far out. Also our local hospital in Milwaukee is slated to have one in 2025. Waiting for a call back from NW’s Fin Dept on our insurance.

  • steven59
    steven59 Member Posts: 102 Member
    #41
    https://csn.cancer.org/discussion/comment/1707636#Comment_1707636

    Since I had cancer on both sides of my neck I was better suited for photon, but I whined enough that my radiologist gave me proton for the last 5 of my 30 treatments. I went to NWM in Chicago for surgery tonsils and lymph nodes both sides and radiation also NWM Warrenville about a 30 mile drive west down 88 from the city.

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