Newly diagnosed

Deek1729
Deek1729 Member Posts: 4 Member
edited April 1 in Anal Cancer #1

I am glad I found this site. I was diagnosed 3/23/24. My first oncology appointment is 4/1. From the pathology and scans it looks like I am stage 3 - scary but survivable. Reading some of the posts I have been able to develop a list of questions for that first visit. I have a number of health issues, including MS and longstanding anemia, so I have been worried about the chemoradiation and how it will affect the other health problems. Again, scary, but I will keep coming back to this site for tips.

Comments

  • mountainrover
    mountainrover Member Posts: 2 Member
    edited April 1 #2

    Hi Deek

    I am just popping in to say hello because I, too, am newly diagnosed and it's quite a ride' when I first found out.

    So I have known for several days and like you I have been scouring the internet and joining forums to glean as much info and support as possible. I had my first body scan this morning which was fun haha and I get the results within two days. Best of luck with yours.

    (EDIT: I found out a few hours later that I am stage 4 with metastasis to the lung and liver. To say I am shicked is an understatement. Wasn't expecting this.)

    There are some good anal Cancer groups on Reddit and a great group on Facebook that is lively and supportive The FB one is called "Colontown" and I highly recommend it - they have several groups so you can either join the general cancer group and/or ask to join the anal group which is called AnalWise. all of the groups are under the banner 'Colontown'

    Best of luck to you moving forward!

    Mountainrover

  • Rebar
    Rebar Member Posts: 33 Member
    #3

    This is a great group.

    Also the chat is very good. Lots of support here for sure, and on Reddit like Mountainrover mentioned.

    I am a member of a great RSO group on Facebook, I can send you an invite if you want.

    Be sure to look into RSO, I believe it saved my life; It certainly reduced my time dealing with anal cancer.

    I was diagnosed in September and as of last month am now cancer free.

    I had 6 chemo treatments, no surgery, and minimal side effects from the chemo. ( Mainly fatigue and a touch of neuropathy in my fingertips, which is slowly getting better)

    Feel free to reach out with any questions or concerns you may have, we are here to help!

  • mountainrover
    mountainrover Member Posts: 2 Member
    edited April 1 #4
    https://csn.cancer.org/discussion/comment/1714364#Comment_1714364

    Hi there

    Mountainrover here.

    I am interested in the RSO Facebook group. What do you need from me to send me an invite?

    Thanks and congrats on being cancer-free so quickly. Terrific news!

    Also is 'chat' separate from the forum threads here? How do I find the chat option? I don't see it. Cheers

    Just after I posted my first post here in this group I got a call from the hospital a couple hours after my Pet scan. I am stage 4 with mets to lung and liver. I have been very down in the dumps about it but I see my new oncologist tomorrow at 2pm so I hope she will be able to make me feel a bit brighter about beating it cos all Google searches say it's unlikely to be cured.

    Cheers

  • Deek1729
    Deek1729 Member Posts: 4 Member
    #5
    https://csn.cancer.org/discussion/comment/1714364#Comment_1714364

    Thanks for the support. I had seen mention of RSO in other posts and have been reading about it. The side effects of chemo and radiation frighten me so RSO seems like it would be helpful.

  • Deek1729
    Deek1729 Member Posts: 4 Member
    #6

    Thanks for the leads to other support.

  • Rebar
    Rebar Member Posts: 33 Member
    #7

    Deek, the RSO will definitely help!

    It immediately helped me with sleep, finally got comfortable enough to get some quality sleep. (LOTS of sleep!)

    And it helped get rid of my pain as well.

    Looking back, I'm sure it had a positive effect on getting rid of my tumor and lesions that I had previously, in a short amount of time.

  • iron9nadin
    iron9nadin Member Posts: 6 Member
    #8
    https://csn.cancer.org/discussion/comment/1714364#Comment_1714364

    Thanks for your share. Can you give a little more on RSO. And connection to the FB group, I couldn't find it in a basic search. Mahalo

  • iron9nadin
    iron9nadin Member Posts: 6 Member
    #9
    https://csn.cancer.org/discussion/comment/1714364#Comment_1714364

    I'm also interested in the RSO fb group.

    Curious of treatment regimen. I have stage 3 colorectal, was suggested by a friend to look into rso suppositories.

  • Rebar
    Rebar Member Posts: 33 Member
    #10

    Here's a link to me on FB.

    https://www.facebook.com/share/CNXeVZmpuvmpVkRw/?mibextid=qi2Omg

    From there I will send you an invite to the RSO group , and also for a reputable source for RSO as well.

    Beware there are a lot of scammers out there taking advantage of cancer patients, taking people's money which is the lowest form of life in my opinion. These folks I got introduced to are honest and have great information for us all. Life saving information.

    I've learned a lot from them!

    One of the things I learned is that while the suppositories will not give you the "buzz" associated with the RSO, they are not as effective in fighting cancer as it doesn't' get into the bloodstream the same way oral dosing does.

    There are ways to use it that will minimize the buzz, like taking it before sleep as I did. ( I worked pretty much full time through my journey, which prevented me from using it during the day.) There's also micro-dosing, where it's dosed a few times a day in very small amounts. Very small.

    In my case, I took it at bedtime; It eased the pain and helped me sleep, which was extremely helpful since I couldn't sit or lay down for more than a few minutes previously. Sleeping is healing, and it sure made a difference!

    The protocol is a 90 day system where you slowly work up to the recommended dose, and at the end of 90 days have consumed 60 grams of RSO total.

    I saw results pretty quickly even with mine being at Stage IV. I had no pain after a few weeks, and at around 6 weeks a scan showed a 50% reduction in my tumor, at around 8 weeks it was completely gone.

    2 more scans showed all negative; and I didn't even get halfway through the recommended dose. In fact I have given a few people my leftover doses to help them get started.

    Everyone is a bit different, and there are 2 different formulas to get, depending on if the cancer is hormonal on non-hormonal. It is not compatible with doing immunotherapy at the same time, but doesn't interfere with chemo or radiation. I had chemo only, 6 treatments total. It eliminated a few of the nasty side effects of chemo for me, like nausea for one. I never once had to take my nausea meds that were prescribed to me.

    Again, there's a lot of good information out there, feel free to reach out to me for any questions!

    Good luck on your journey my friend

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