What to Expect

I was recently diagnosed with the Stage 3 Anal Cancer. Was numb at first but now ready for the Lord to direct the steps I need to take. The treatment recommended is radiation with chemo.  To be honest the side effects of the radiation scare me. so I would love to hear the good the bad and the ugly of what others have gone thru. Also did anyone research or consider any sort of treatment with cannabis. Rick Simpson Oil?  and or use for pain relief? 

Thank you in advance for you input 

3 people threw a punch at your cancer.
Jeanie, Sandy sent you a prayer.
4 people sent you a hug.
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Hi Pamela! Welcome...sorry you need to be here but this is a place filled with knowledge, wisdom and also a place where there is no such thing as TMI :)
Read thru all the great information on what to do prior to and during treatment. Helen Marshall, Tyndal, Daisy and many others have some really great insights!
I was also diagnosed as Stage 3...I was treated with the recommended protocol of Chemo/radiation. It is brutal but blessedly short. In my opinion the wost part of treatment is at the very end and the 2 weeks following. This is the time the chemo and radiation/burns really take their toll...but most people feel much better after 2 weeks. There is a definite "new normal" for most...but for now focus on beginning and completing your treatment. Again, Helen and Tyndal give great info on this.Things like getting your house in order, stocking up on things you may need....salt and soda rinses for mouth sores, cotton panties, loose gowns to wear...and also treat yourself to a little pamper time is all good!Keep us posted on how you are doing and ask questions, vent, whatever and whenever...we will help you thru this!!
Hugs!
Sara
Hi Pamela. I am do sorry you have to have this period of your life. The treatment is harsh but doable. Usually anal cancer cells are pretty sensitive to radiation, and a tumor "melts" like a butter. Mine was gone in a few weeks. However, the radiation works in your body for several month after the last fraction and takes a care of the rest mitotic cells. You can find a lot of info about skin care and starting to use vaginal dilators from your care team and on-line. I used CBD oil during my chemo, and it helped a lot with nausea and a loss of appetite. Try to live day by day and be gentle to yourself. Hugs!
Hi Pamela. I welcome you, but am sorry you have a reason to be here. You will find lots of support and good information here, so just let us know what you need from us.

I was diagnosed with anal cancer that was on the fence between stage 1 and 2 in 2008. I had the usual treatment, 2 rounds of chemo and 30 radiation treatments spanning 6 weeks. I am still here to tell about it and, all things considered, doing reasonably well. It is a tough treatment, especially towards the end, to be sure. However, it is relatively short, typically 6 weeks, so my attitude was that I could get through anything for 6 weeks, which I did. For me, the burns from the radiation and the relentless diarrhea were, by far, the worst side effects. Some people have it a bit easier than others, but I think I was in the not-so-easy group. That said, there are many things to ease the pain and diarrhea, so before you begin treatment, make sure you've had that conversation with your doctor, nurse, or other member of your healthcare team and have those things at the ready. You may also experience nausea, loss of appetite, mouth sores, extreme fatigue, and urinary tract issues (burning). Discuss all of this with your doctor up front so you can be prepared.

As for cannabis or Rick Simpson oil, I have no experience with either. I know cannabis can help some people. As for the oil, I wouldn't put any faith in that, but that's just my opinion.

Ask questions here--you'll always get a response from those who want to help. You may feel bombarded when you get several different answers or recommendations, but all are worth considering/trying when you are in discomfort or pain.

The main thing to remember is that this is a short block of time in your life and you can get through it. Ask for help, don't turn down offers of assistance at home, whether it be cleaning your house, running errands, or providing meals. Take care of you! I wish you all the very best and hope to follow you as you begin this journey. You can do this! Hugs!
4 people like this comment
I’m 16 months from last treatment. My doctors were pretty up front with me telling me this was a hard treatment to get thru. But what they didn’t say was it takes years after to recover. Things that I found out was chew ice when you get the chemo mitamicin. Not sure if I spelled that correct. It helps ALOT! That chemo gives you mouth sores about a week after getting it. It will hurt to swallow anything. They will prescribe miracle mouthwash to help the mouth sores. Try to get Lidocaine for the mouth sores also. That’s what helped me eat. The lidocaine will also help when you get the radiation burns. Mix it with aquaphor and smear it all over. I tried pot and it made me paranoid. It did not have enough pain relief. I was on fentynol pain patches. Everyone has a different experience. Some people have said they didn’t get the burns! I had bad burns. My blisters had blisters. Some people didn’t get as much pain as I did. I know that when you pee it feels better to pee when your in water. So some ladies used a sitz bath and peed in water the whole time. I wish I thought of that. Some ladies had a squirt bottle of water they sprayed while they peed. Are you getting a port put in? I found that wearing a sports bra 24/7 after getting the port was very helpful for the first week. The treatment was hard weeks 4, 5, and 6 for me. Then when your done you will start to feel better about three weeks after. And then every week you will notice a difference. I know some ladies had to go back to work after. I was lucky and was off three months. My body was beat up by the treatment but I made it to the end and I’m cancer free. You will make it and be cancer free! Hopefully you will be one of the ladies that doesn’t get burns or mouth sores.You will do great! I was stage 3b also. I hope that gave you some ideas. If your on Facebook there’s an Anal Cancer group too. Hugs!!
Hi Pamela: I'm 3 weeks out from treatment, and agree with what I read already posted, that week 3 is when I started feeling human again. Don't want to repeat what has already been posted, but do want to add: I used Silvadine with Lidocaine (prescription compound that most pharmacies can make) for my burns, and that made a Huge difference. Good luck, stay close and feel free to vent whatever you need to as we've all been there and back. I found more helpful information on this blog for Anal CA than from my MD's.
Hey Pamela! As others have said, it’s not fun, but you get through it and go on with life. I’m close to five years out with NED (no evidence of disease). I do have bowel issues, usually in the morning, but I did before treatment as well (irritable bowel syndrome). During treatment I had some burning which was helped with silver sulfadine and an over the counter product called Recticare. It has 5% lidocaine and numbs you up for at least an hour or two. Get some “magic mouthwash” prescribed before treatment. Most of us got mouth sores from the chemo, and it helps numb the mouth so you can brush teeth and eat. I had continuing gut issues a couple of years after treatment and saw a nutritionist. I should have requested a referral to her BEFORE treatment though...it would be invaluable to get you started on the right track. Good luck, Pamela—we’re all pulling for you! And keep us posted about your progres...we really do care.
5 people like this comment
Dear Pamela...as others have said you are so lucky to find this site now...I did notknow about it until after my treatment had ended...the help here is just outstanding. We care about each other and we probably know more than many medical folks! No substitute for experience...
My website for anal cancer is www.analcancerhelp.info - I hope you find something useful there and please let me know what you think is missing! Hugs...
Maggie, Easterly like this comment
Yes, Helens website is a extremely valuable necessity!
Cheryl likes this comment
So much great information for everyone here! I would just add to please talk to your doctor about using dialators during and/or after treatment. I will be praying for you. You got this! Hugs Jane
Welcome Pamela. I was diagnosed in Dec.2017 (treatment Jan-Feb 2018) with stage 3A. I've found this site to be so helpful and supportive, and full of love and only the best intentions. That being said, from my experience, the short term effects of the radiation are literally a pain in the butt, but the key words are SHORT TERM. Those burns do eventually heal over a few months, so be gentle to yourself and listen to your body. What worked for me were the painkillers, anti-nausea pills, aquaphor healing ointment, cotton panties, and loose pajamas! As for CBD, I'm sure some of us on here have found it quite effective-I didn't use it but if you have access to it, I think its worth a try. The explosions of diarrhea suck, and you will have to balance that without getting constipated (I always took Imodium before leaving the house). Make sure you are always near a toilet. There will probably be lingering long term effects, but nothing that you can't handle or adapt to your new normal. Hugs to you!
Karen, Easterly like this comment
I am 5 months out from treatment. I would agree with all that has been said as far as pain, recovery and perseverance. The most important thing I would like to add is that I went to MD Anderson for treatment (changed plans after I had been worked up and was ready for treatment locally). The standard protocol includes Mitomycin which, as I understand, causes lowered blood counts requiring 1 or 2 weeks treatment postponement. MD Anderson uses Cisplatin which takes 2 hours to administer compared to a few minutes for Mitomycin. However, I had very little nausea, never threw up, never had mouth sores, and no delays in treatment. It was less convenient to go to Houston rather than have treatment locally and, of course, there was the cost of staying in Houston for treatment but I avoided the side effects of Mitomycin and have been so amazed and blessed by the caring treatment of everyone I have encountered in MD Anderson. All the providers work as a team to determine the best treatment for every individual and are extremely responsive to any issues that arise. People come from all over the world for treatment there and it is well worth it. They treat about 75 people a year with anal cancer. I didn't ask my local doctors but I can't imagine they have treated many, if any, with anal cancer. I chose the experts.
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Hi Pamela and welcome to our warm and loving blog. We are dealing with pancreatic cancer so our treatment is not the same but still rugged. My husband is the cancer fighter and I have been caring for him since his diagnoses in October 2016. I wanted to chime in because we have used Rick Simpson Oil and still do on and off. It definitely helps with appetite and mood if you are really really miserable. It sounds like you may be from time to time later in treatment. The goodness is your treatment is short lived and highly successful. Yea for that.

Rick Simpson Oil is expensive, we have purchased it in small syringes for about $150. A dose is about the size of a kernel of rice. We would put it in an empty capsule and take it like a pill, or sometimes I would make my own gummy bears with it. This way we knew the dose would be consistent. Neither my husband nor I are smokers so using the oil or making our own eatables worked well for us. Medicinal marijuana is legal in our state easy to obtain legally. It would last us months. Looking at the big picture we thought the cost was worth it.

Please keep us posted as we will all be pulling for you and praying. Hugs
3 people like this comment
Hi Pamela, welcome to the best resource for information about anal cancer that there is. Also feel the caring comments from these wonderful people. I can't add much more to the advice that has been given. Everyone is different, some even get no burns, went out to dinner and had a relatively easy time. Maybe you will too! The cancer protocol is pretty standard all over the world and is a good cancer to CURE. Hang on to that idea, and you'll be through this time sooner than you can imagine. I relied on Oxycodone pain medication and weened myself off relatively easily after treatment. Diarrhea and constipation: try to keep regular. I was constipated and then the dreaded diarrhea came. Know where your toilets are!
Easterly likes this comment
I'm so happy to see you here, and so sorry you are facing this!


You will find, here, ladies much older than you have made it through and are thriving. It takes time to recover, but myself; 3 years after treatment; and near 70, I'm still healing; which is more than I expected, that I can still see the needle moving, long after.


The misconception is cannibis is a cancer killer, BUT, is ONLY a pain medication and NOT a treatment. Unfortunately this rad/chemo according to the NCCN.org IS the only best statistically based treatment, right now. Also, cancer isn't something you can put on hold.


We have some people, that have come and asked that question about alternatives, and even delayed treatment, but the cancer continues to grow; so the longer treatment is started; the more risk.


Please feel free to ask us lot's of questions.


We even have a medical folks that have unfortunately for them gotten AC, but great resources for the rest of us.


You do need to let your medical team know what you are taking; so the treatment can be effective; and so it doesn't increase the digestive issues.


We are here for you!
Hi Pamela and welcome to our site. You found the best site possible for AC fighters. I have posted on some recent member's blogs about must-do's in addition to what Helen and Tyndall have on Helen's website. I will look for it and direct you there. I like the ice idea during chemo as those mouth sores can be difficult. Start drinking lots of water now, during, and after treatment. It's important to keep your body hydrated for both chemo and radiation. Moisturize, moisturize, and moisturize all your parts down there. Can't stress that enough. As for cannabis - yes, I used it for pain, nausea, and appetite as vicodin did not work for me at all. I can direct you to a medical cannabis site that sends their products to you. I used tinctures - one for daytime and one for nighttime. It was a lifesaver for me. I can PM you so just let me know.
D
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January 25, 2019

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Anal Cancer

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