10 years and grateful

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sandysp
sandysp Member Posts: 868 Member
edited November 2023 in Anal Cancer #1

Hi, 

I used to be on this board every day. It was a lifeline. I wsa very frightened and hurting. Anal Cancer put me through a lot too. But I am happy to say even though my cancer was late stage, we  beat it back with the protocol treatment, chemo and radiation, simultaneously. For me it was brutal. I am alergic to Sulfa and so they could not give me the Sulfadine ointment and I had to make do throughout with just Aquaphor for the radiation burns. 

Now, it is such a distant memory. It has been ten years. My last treatment was August 18, 2011.  Having anal cancer taught me a lot about myself and all the people who work in cancer treatment and rehabilitation. i am very grateful. Push through it. It is worth it.

i discovered i have Lymphodema and have faced and managed it successfully.Also, If you have lymphadema as a result of the cancer invading your lymph nodes, disabling them, learning to take care of it is not hard. I now feel everyone would benefit from the self care I give myself to assist my lymphatic system. That I had it and it was discovered, was at first depressing and daunting,. But I am pleased to say, so far, it's not bad at all to do what it takes to manage it..The benefits far outweigh theh challenges.

Hang in there and keep supporting each other. The interactions on This board with survivors taught me a lot and gave me a lot of support and hope when I needed it most.

God bless you.Hang in there.

Sandy

Comments

  • pializ
    pializ Member Posts: 508 Member
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    Sandysp

    Hi! 
    I am so very glad to see you here after all this time! You helped me along my path. I was diagnosed 9 years ago next month. I hope you have somehow managed to enjoy life again!

    Kind regards

    Liz

  • PainInTheBum
    PainInTheBum Member Posts: 99 Member
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    So glad to hear you are doing well.

    I have read many of your posts from way back (in fact, I think I have read EVERYONE'S posts).  I, too was on here every day when I was first diagnosed.  Finished my treatment about 2 1/2 years ago.  So far no sign of cancer returning.  Getting tested regularly.  I don't come on here as often as I did in the beginning but this forum gave me so much hope and help during my treatment.  It was such a scary time.  My body will never be the same as before cancer, but, hey!  I'm still here and doing ok!  Have to adjust my eating and going out times but it's doable.  I have so much to live for so whatever I need to do to stay healthy I will.  I'm so glad for everyone that posted their experiences with this.  It's terrifying when you first get told you have it and no idea what to expect.  Comforting too to hear back from ones who have had the treatment so many years ago and are doing well.  It's encouraging.  I'm so grateful to have found this page when I needed it most.

  • caholz33
    caholz33 Member Posts: 45 Member
    edited September 2021 #4
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    Congrats on your Victory and Positivity!

    Thanks for posting this positive message!  It's been 8 years since my Stage 2 ordeal.  We are so amazingly fortunate to have the treatments and resources available to survive and thrive, if not perfectly, then as best we can.  My experience convinced me that hope and gratitude are as powerful as any medication.  God bless you and thank you for encouraging others!

  • annie4145
    annie4145 Member Posts: 218 Member
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    caholz33 said:

    Congrats on your Victory and Positivity!

    Thanks for posting this positive message!  It's been 8 years since my Stage 2 ordeal.  We are so amazingly fortunate to have the treatments and resources available to survive and thrive, if not perfectly, then as best we can.  My experience convinced me that hope and gratitude are as powerful as any medication.  God bless you and thank you for encouraging others!

    Congratualtions on 10 years!!

    Congratualtions on 10 years!!! so happy for you.

  • CAMDEN6918
    CAMDEN6918 Member Posts: 4 Member
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    NEARLY 4 YEARS AND COUNTING

    I was diagnosed in August, 2017 with Stage 3b anal cancer. I remember my medical oncologist taking both my hands in his, looking me squarely in the eyes and telling me "This is highly curable." I had faith in him and God and never doubted I'd be okay. My husband was with me every step of those brutal months but knew I was cancer free 2 months after treatment. He passed away 6 weeks later. I've recently moved and leaving my cancer team was very emotional. I've moved to a new state and the truly excellent records that were sent ahead to my new oncologist have helped me settle into a new follow up schedule without missing a beat. I'm beyond grateful.

  • CharlotteW
    CharlotteW Member Posts: 15 Member
    edited October 2021 #7
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    14 Years and Counting

    Smile  Hi, I haven't been on here for some time either.  I am 14 years past my cancer and happy to still be here.  So glad to see others that are still here too.

    I usually just read the comments and got encouragement from them.  I want to let the ones just starting this journey to stay the course and you can beat it!!

     

  • tanda
    tanda Member Posts: 174 Member
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    Sandysp

    Glad to hear you are doing well.  I am 7 years out.  I remember you from the first few years that I was in this group.  I still check in to blogforacure, several  people are on both groups.

    I am interested in how you discovered lymphadema and how you are taking care of it.  I think I may have a mild case in one or maybe both legs.  I ankles are botheringme, but they arenot hot, red or swollen, but they feel very strange.  I wonder if I should get support hose, but don't know what and I think they have to be fitted.

    I'm no longer under surveillance by my oncology team; perhaps I should try to return to my pelvic physical therapist who helped me a for a few years .

     

    Radiation is the gift that keeps giving !

  • PainInTheBum
    PainInTheBum Member Posts: 99 Member
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    Congratulations on your 10

    Congratulations on your 10 years.  I have read all your posts in the past.  (in fact, I have read ALL of the posts on here when I was first diagnosed).  This forum has been so helpful to me during my treatment 2 1/2 years ago.  In the beginning I was on here reading.  May not have posted much but I really appreciated all who did.  Just knowing I was not alone in this battle was so comforting.  Just knowing some of strange side effects of treatment were not abnormal was a relief.

    Seeing so many doing ok many years after treatment gives hope to those who are just beginning.  I hope one day I can post 10 years plus too!

  • kateril
    kateril Member Posts: 19 Member
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    Thank you. I have been diagnosed T3N1M0, and start Nigro protocol on January10, 2022. I'm trying not to freak out, and I hope signing up here to read about others' experiences may help me.

  • sandysp
    sandysp Member Posts: 868 Member
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    I just caught up with this. You are on the right track. My pelvic pt was the first to inform me of the lymphadema. Mine is in both legs, stage two. That makes it, I think harder to diagnose unless the person is very educated in what to look for. I have gained twelve pounds since the pandemic but my legs were checked and they improved slightly since my last check up two years ago, in spite of the weight gain, so the program I was given of support hose, (Medpro) a girdle (juzo) and manual lymphatic drainage self administered is really working well. My legs feel so much better from wearing the compression garments that I pull them on all summer long.

    it does not improve on its own. So do follow up on the care. My PT was prescribed by the physiatrist at the cancer rehab center associated with the hospital. It pays to take care of ourselves.

  • tanda
    tanda Member Posts: 174 Member
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    Thanks!

  • zetapup
    zetapup Member Posts: 10 Member
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    dear sandy, inspired, truly, by your positivity and resilience. god bless you !

  • nellie67
    nellie67 Member Posts: 28 Member
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    I am 13 years out, I too was on this forum daily and everyone was so helpful and supportive. I honestly don't know what I would have done without everyone that cared. It was so scary and I felt so helpless, the pain, the fear was eating away at me and truly no one in my surrounding life could help me but coming here I was amongst people who either were going through it or had gone through it and looking back I was so lucky to have found this board. Martha if you are still here BIG HUG, you are a wonderful caring person with great info and tips to get through the pain. You were always there when I needed someone, Thankyou. 💗

  • Mharrington
    Mharrington Member Posts: 23 Member
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    Since you are both many years out from treatment, do you still have bathroom issues? I am 1 year out and still have to stay close to a bathroom in the morning. I so long to go on my daily hikes, but the frequency and urgency in the morning really makes it difficult. I have been taking Metamucil and that has at least helped with consistency greatly, but I'm am so afraid to be somewhere and have to go with no bathroom around. Does it get any better?

  • nellie67
    nellie67 Member Posts: 28 Member
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    I still have issues sometimes, in the morning I don't stray too far from the bathroom. I have a fissure and a hemmie so I eat alot of fiber, for me being constipated is a bad bad thing. However all in all its probably better now than it was, keeping yourself on a routine and allowing yourself extra time in the morning will help. I on occasion still have an accident but not as many as I used too. I have noticed through the years I may have developed some IBS maybe from the radiation so I am aware of certain foods to eat and not eat. If it something I shouldn't eat but I really like I just eat a little of it, like salsa or spicy stuff. I also found an ointment for any flareups I may have for my fissure and hemmie that has really helped, its call Dr Butler's I purchased it on Amazon and it really helps to relieve pain and swelling. I hope things will get better for you, hang in there and find routine in your daily life, eating the right foods for you and the timing of your meals.

  • PainInTheBum
    PainInTheBum Member Posts: 99 Member
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    I'm out about 4 1/2 years and I too used to be on here daily looking for guidance and tips. This forum was a life saver for me. I haven't been on here for a long time....I guess that's a good thing though. For anyone just starting out on this journey you'll find many others willing to help you, I know I did and was grateful. I've got a colonoscopy coming up next week (not looking foward to the prep) and so far no signs of cancer but it's always stressful when it gets close to appointment and test times.

  • z
    z Member Posts: 1,414 Member
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    I am over 14 years cancer free. Ended tx in July of 2009 was stage II hpv anal cancer. I used to look for long term survivors when I was on here it always gave me hope. My dr. told me if your going to get cancer this is a curable one and he was right. Of course the tx is an ordeal but it cured my anal cancer. I wish everyone the best.

  • smr7059
    smr7059 Member Posts: 14 Member
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    I am so grateful for all the positive comments & support from those of you who have gone through treatment & are doing so well. I’m starting wk 4 of a 6 wk treatment, along with a 2nd. Round of Chemo 5FU 96 hr. Pump in wk 5. So far, so good. I got through the 1st. Round of Chemo with Mitomycin & 5FU & had all the side effects that everyone talked about. ( Mitomycin is toxic!) Now that I just started wk 4 of Radiation, can anyone tell me what to expect in terms of pain, sores, etc. for the last 3 wks. Of treatment. I use Coconut Oil twice a day & Lidocaine where the sore is. So far, I’m not seeing any signs of my skin breaking down, but just don’t have any idea what’s in store for me. I know that the pain is going to kick in, but wondering if the pain meds really help manage it. And, do most people have raw skin issues to deal with? As you can tell, I’m anxious & concerned about what to expect in the next 3 wks., & appreciate any help you can share with me. Very Grateful!

  • z
    z Member Posts: 1,414 Member
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    I would take a bath then go get my radiation tx then come home and take my pain pill. The bath relieved any immediate pain and the pain pills would keep the pain manageable. I took the pain pills as prescribed and never refilled them after they were gone. The radiogist suggested a cow balm which is used on cow udders. I used that to keep the area medicated. Probably does the same as the aquafer.

  • smr7059
    smr7059 Member Posts: 14 Member
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    Thanks for your help & I think I’m on the right track .