In Treatment and new to this board

MsVJP · May 2014

Hi everyone! I'm brand new to this site and have been reading many posts. First, I will tell you about myself and then I have a couple of questions.

I'm a 57 year old VERY healthy femaile. My primary doctor jokes with me about how very healthy I am and wishes he had my cholesterol levels. I used to walk/job 2-4 miles daily, eat super healthy, drink lots of water, go dancing twice a week....trying to stay super healthy. I NEVER would have thought cancer was in my future.

But, I had a colonoscopy on March 6th and expected I would be told I have an internal hemorrhoid. I was shocked to learn I had a 4 cm tumor. Initally I was told to see a surgon as I had rectal cancer, but the next day I was told to see an oncologist as it was squamous cell carcinoma. Because of the size of the tumor and the fact that my pelvic lymphnodes were enlarged (but did not ligh up on the PET scan), They put me at a Stage 2/3. I started my treatment on April 3rd. I have 32 radiation treatments (30 tumor and pelvic lymphnodes and 2 boosters to just the tumor) and 2 rounds of chemo. My Oncologist used Cisplatin instead of Mitomycin C as the Mitomycin is very hard on bone marrow. So, I had my first round of Cisplatin with 5FU and have my last round next Monday. I think I have faired well considering I'm allergic to all pain medications and have had to rely on Aleve as my only pain relief.

It's so nice to find a place where I'm not judged for having anal cancer. I will say, I'm not shy when people ask. I just hold my head high and tell them exactly what I'm dealing with.

Since I'm so new, I don't understand a lot of the acronyms that are used here. What is NED? Is there a place where I can find the acronyms?

Is it normal to have some low level nausea with radiation? I had really bad nausea with the chemo, but this is more of a low level type.

Anyone using Cannabis Therapy? I was using it during the 4 weeks up to my radiation/chemo treatment, but had to stop due to the nausea. I plan to continue it after my treatment ends. Fortunately, I live in Colorado where it is legal medicinally and recreationally so it is readily available.

So very happy to have found this board. Having such a rare cancer makes it difficult to discuss with others...

Vicki

Phoebesnow · May 2014

Newbie

Hi, welcome! Others will come along in the a.m..

Ned is no evidence of disease, I think there is a list. Somebody knows.

Sounds like you are doing great!

Im in Los Angeles. cannabis is an option here also.

sephie · May 2014

sorry u are here

i did not use cannibus at all....i also did not use pain meds but did suffer with lots of pain but i made it through it...i always call the tx "torture'... also my post check ups hurt because of radiation damage..... i am almost 5 year post tx.....i had slight nausea but none of the meds helped.... I was stage 2 no nodes no metastisis and i am NED ( no evidence of disease).... sephie

mp327 · May 2014

Welcome Vicki

I'm sorry you've had a reason to join us here, but I assure you, you will be fully supported. Good for you for not shying away from telling people what type of cancer you are dealing with! I try to do that too, depending on the situation. People need to know that this is a disease that can happen to anyone, even them! Your pic certainly shows that you are a very healthy woman and I admire your healthy, active lifestyle. I am the same way--well, I fall a little short on the eating healthy sometimes, but I'm a fitness nut and think I am doing very well at age 60 and 5 1/2 years post-treatment.

I'm glad you have not had any real serious side effects from the treatment. I would say that some nausea is not out of the realm of normal when it comes to radiation. If that is the only side effect you are experiencing from radiation, then I'd say you're doing great! I see NED has already been explained for you--that's what we all hope to get on our follow-up tests! That term is more commonly used than remission in cases of anal cancer.

As for the cannabis therapy, I did not use that. Unfortunately, it's not legal in my state. However, knowing what I now know about it, if it had been, I would have tried it. I suffered such severe pain from the radiation burns and I think it would have helped me. I'm glad it's been an option for you.

As you probably already know, anal cancer treatment has a high rate of success. Some of us on this board have reached the magical 5-year survivor mark and beyond. You have every reason to be hopeful that your treatment will have great results and that you'll be joining the 5+ year survivor group one of these days! I wish you all the best with the remainder of your treatment and hope you have a speedy recovery! Take care!

Martha

eihtak · May 2014

Hi Vicki....

Welcome to a great group of people who have become like family over the years, although I am always sorry to add yet another. It sounds like you are moving through treatment fairly well and almost to the finish line.....congratulations!! I did not use cannabis therapy for this so can not offer much help there. I was diagnosed 3 years ago with stage3b anal cancer with lymph node involvement. I began on a clinical trial but had some complications and had to come off it and finish with protocal treatment alone. My doctor used Cisplatin and 5FU as well and I have been NED (no evidence of disease) since. They seldom use the word "cured" these days, as NED protects them in case there is disease but just not seen.

I had a LOT of nausea throughout chemo/rad and had as I said some complications early on. I have a colostomy as part of my journey and the radiation caused some issues. I was hospitalized and given shots of Zophran that helped a lot but prior to that drank a ginger tea that a friend gave me that helped tremendously also. I would sip on it all day. I was in extreme pain so also took pain meds during treatment but it wasn't long after radiation that healing began and pain subsided.

One year later I was diagnosed with a rare breast cancer unrelated to the anal cancer so back in treatment! Two years NED on that now!

Its funny, taking both cancers out of the picture I consider myself VERY healthy also. I have not had a cold/flu/infection of any sort for many years and was last prescribed antibiotics 25yrs ago! I have always been active and eat "mostly" healthy with a few indulgences here and there to feed my soul. Cancer doesn't seem to care, though I think being otherwise healthy contributes to easier healing and recovery in some ways.

I wish you well as you continue to move forward and please don't hesitate to ask as you encounter questions. Nothing is off limits here.....we've all been there.

katheryn

horsepad · May 2014

I was diagnosed with stage 4

I was diagnosed with stage 4 cancer almost 3 years ago. I did not tolerate radiation and chemo very well. I had severe nausea and lost 40 pounds because I could not eat. Also, had numerous, painful mouthsores. I was on two different pills for nausea and another pill to make me hungry. None of the pills helped. My son suggested I try a "natural" remedy instead of multiple pills that weren't working. Although illegal in my state, I spoke to my oncologist about smoking pot and he saw nothing wrong with it and said he knows it has helped alot of people. I smoked it and it worked! It took away my nausea and I was able to eat. I threw away the pills!

gabby_ca · May 2014

A big welcome to you....
I

A big welcome to you....

I am an 8 year survivor of T3,N0,M0 and had a large tumour as well. I am in BC, Canada where cannibis is an option as well as I have partaked. Yes, I have and still do. Not everyday mind you but it sure beats he presciptions and the side effects as I also work with massive horses.

Today finds me happy, healthy and doing amazing this long out. I have very little residual effects from the cancer or the treatments other than a few bm's in a cluster first thing in the morning. If I can work 60 hour weeks with horses outside and manage a rescue facility for horses at home after hours with a young son, I think I am doing ok.

I hope you learn lots here. Again a big hug to you.

Gabby

TraceyUSA · May 2014

Welcome Vicki

Sorry you are here for the same diagnosis we all are.

I, too, considered myself heathly and was blown away by the diagnosis (T2 or 3, N0, M0). I am 1 year, 2 months post treatment (2 rounds of Mitomycin & 5FU, 33 radiation treatments) and all my scans and exams have come back clear!

I was given Zofran at the start of treatment and never had nausea.

Cannibis is not legal here either but I'm interested in this therapy. Please share what you know.

- Tracey

cher.faith · May 2014

Post rectal cancer surgery

Hi Vicki,

I am new to this board today! Thank you for posting your story! You like all the others are very very brave and i am so proud of all of you! My husband who is 56 was diagnosed last September with rectal cancer, (about the same size tumor as you Vicki and stage 2) was up in the U.P of Michingan hunting and had to come home do to bleeding. We too thought is was going to be hemorrhoids, so also experienced the shock that it was rectal cancer. It has been quite a journey since then, but we had an amazing surgeon and he got it all and John is now doing post chemo w/ oral 5FU. Before his surgery he did have 38 days of radiation and oral 5FU at the same time. He took a lot of nutritional shakes and he never lost his hair or got any mouth sores. He did have some foot/hand pain which can be common with 5FU. Now though he is having severe stomach pain. His doc was giving him 6000mgs a day (realized it was to much! No kidding doc! So he is off it for 2 weeks) so i was searching for some insite when I found this board this morning. I can say that medicinal pot is legal here in Michigan and he has used it some and it helps a lot. I am going to encourage him to do so this weekend. I also am a big believer in Pro-biotics to rebuild the good bacteria growth, so he is taking this too, I am going to increase his dosage today. Being his wife/caretaker I am always looking for ways to make it "better" for him. Little things to change during this can make a huge difference i have found. So to all of you out there please keep sharing! Just today on this board i have learned a lot! Thank you soo much!

What helps us? We do laugh a lot....it helps tremendously! Right now he has an illeostomy, we call it "Leo" for short. Funny right? It's a lot better then "the bag". He will have a reversal after this post chemo treatment. As you can tell John has a great sense of humor, it helps us to just laugh through the tough stuff sometimes. We have our moments of tears too, but then talk about all the blessings that have come out of the journey. Always look for those. Relationships grow a lot during this time. Friends and Family are AMAZING. We pray and keep the faith. John is like all of you, a very brave soul, even when he stuggles he will say "there are others who are suffer more". Very proud of my guy. We also have used ice packs, Urea cream (for hands and feet) He drinks lots of sport drinks and water (he did get dehydrated once, so keep drinking!) Eats yogurt, rice, pasta. Sherbet and gingerale taste very good to him. I could use some help on better foods to feed him if any of your have any ideas, as he is not supposed to have raw foods because of "Leo" and would like him to have more nutrition. It really upsets me that the oncologists don't address nutrition more! Nausea seems to always be a problem. John was getting relief with the Pro-biotics and yogurt, but once the chemo built up in his system again, stomach pain got bad again, so this is where we are now. A gal on here said she tried everything then went to oxy and tylenol and that was the only thing that took the pain away. I just gave this to John so we will see if it helps.

This is the posting of a caretaker. I hope you all don't mind that I have joined from this perspective, and i hope that some of this helps you Vicki and others. Rectal cancer is a different beast then colon cancer we found out. As we talk to people we are finding that rectal cancer is out there, but like you said people are reluctant to talk about this type. Glad you are out there breaking the silence!

Vicki, sounds like you have a wonderful attitude! Keep pressing on and through.

God Bless you, and each and everyone of you! You are all very special and amazing! Thank you for taking the time here to share.

See you around the board.

Your friend,

cher

mp327 · May 2014

cher.faith said:
Post rectal cancer surgery
Hi Vicki,

I am new to this board today! Thank you for posting your story! You like all the others are very very brave and i am so proud of all of you! My husband who is 56 was diagnosed last September with rectal cancer, (about the same size tumor as you Vicki and stage 2) was up in the U.P of Michingan hunting and had to come home do to bleeding. We too thought is was going to be hemorrhoids, so also experienced the shock that it was rectal cancer.   It has been quite a journey since then, but we had an amazing surgeon and he got it all and John is now doing post chemo w/ oral 5FU. Before his surgery he did have 38 days of radiation and oral 5FU at the same time. He took a lot of nutritional shakes and he never lost his hair or got any mouth sores. He did have some foot/hand pain which can be common with 5FU.   Now though he is having severe stomach pain. His doc was giving him 6000mgs a day (realized it was to much! No kidding doc! So he is off it for 2 weeks) so i was searching for some insite when I found this board this morning.  I can say that medicinal pot is legal here in Michigan and he has used it some and it helps a lot. I am going to encourage him to do so this weekend.  I also am a big believer in Pro-biotics to rebuild the good bacteria growth, so he is taking this too, I am going to increase his dosage today. Being his wife/caretaker I am always looking for ways to make it "better" for him. Little things to change during this can make a huge difference i have found. So to all of you out there please keep sharing!  Just today on this board i have learned a lot! Thank you soo much!

What helps us? We do laugh a lot....it helps tremendously! Right now he has an illeostomy, we call it "Leo" for short. Funny right? It's a lot better then "the bag". He will have a reversal after this post chemo treatment. As you can tell John has a great sense of humor, it helps us to just laugh through the tough stuff sometimes. We have our moments of tears too, but then talk about all the blessings that have come out of the journey. Always look for those. Relationships grow a lot during this time. Friends and Family are AMAZING.   We pray and keep the faith. John is like all of you, a very brave soul, even when he stuggles he will say "there are others who are suffer more". Very proud of my guy. We also have used ice packs, Urea cream (for hands and feet) He drinks lots of sport drinks and water (he did get dehydrated once, so keep drinking!) Eats yogurt, rice, pasta. Sherbet and gingerale taste very good to him.  I could use some help on better foods to feed him if any of your have any ideas, as he is not supposed to have raw foods because of "Leo" and would like him to have more nutrition. It really upsets me that the oncologists don't address nutrition more! Nausea seems to always be a problem. John was getting relief with the Pro-biotics and yogurt, but once the chemo built up in his system again, stomach pain got bad again, so this is where we are now. A gal on here said she tried everything then went to oxy and tylenol and that was the only thing that took the pain away. I just gave this to John so we will see if it helps.

This is the posting of a caretaker. I hope you all don't mind that I have joined from this perspective, and i hope that some of this helps you Vicki and others. Rectal cancer is a different beast then colon cancer we found out. As we talk to people we are finding that rectal cancer is out there, but like you said people are reluctant to talk about this type. Glad you are out there breaking the silence!

Vicki, sounds like you have a wonderful attitude!  Keep pressing on and through.

God Bless you, and each and everyone of you! You are all very special and amazing! Thank you for taking the time here to share.

See you around the board.

Your friend,

cher

HI cher

How wonderful that you have come here as a caretaker to learn about anything that can help your husband tolerate treatment better. I'm sorry that he has had to go through all of this, but you both sound like strong and positive-thinking people, so I'm sure you two will get through it. Since I did not have an ostomy of any type during my treatment, I am hesitant to comment about dietary issues. I know that raw foods are not a good idea and the foods that are tolerable that you have listed are the ones I would probably recommend. It sounds like John is on a low residue diet, which is what I had to follow for awhile after having a blockage in my small intestine. If you are able to arrange it, perhaps a consultation with a dietician/nutritionist would be helpful.

I wish John and you all the best and hope you'll continue to post and let us know how things are going.

Martha

eihtak · May 2014

cher.faith said:
Post rectal cancer surgery
Hi Vicki,

I am new to this board today! Thank you for posting your story! You like all the others are very very brave and i am so proud of all of you! My husband who is 56 was diagnosed last September with rectal cancer, (about the same size tumor as you Vicki and stage 2) was up in the U.P of Michingan hunting and had to come home do to bleeding. We too thought is was going to be hemorrhoids, so also experienced the shock that it was rectal cancer.   It has been quite a journey since then, but we had an amazing surgeon and he got it all and John is now doing post chemo w/ oral 5FU. Before his surgery he did have 38 days of radiation and oral 5FU at the same time. He took a lot of nutritional shakes and he never lost his hair or got any mouth sores. He did have some foot/hand pain which can be common with 5FU.   Now though he is having severe stomach pain. His doc was giving him 6000mgs a day (realized it was to much! No kidding doc! So he is off it for 2 weeks) so i was searching for some insite when I found this board this morning.  I can say that medicinal pot is legal here in Michigan and he has used it some and it helps a lot. I am going to encourage him to do so this weekend.  I also am a big believer in Pro-biotics to rebuild the good bacteria growth, so he is taking this too, I am going to increase his dosage today. Being his wife/caretaker I am always looking for ways to make it "better" for him. Little things to change during this can make a huge difference i have found. So to all of you out there please keep sharing!  Just today on this board i have learned a lot! Thank you soo much!

What helps us? We do laugh a lot....it helps tremendously! Right now he has an illeostomy, we call it "Leo" for short. Funny right? It's a lot better then "the bag". He will have a reversal after this post chemo treatment. As you can tell John has a great sense of humor, it helps us to just laugh through the tough stuff sometimes. We have our moments of tears too, but then talk about all the blessings that have come out of the journey. Always look for those. Relationships grow a lot during this time. Friends and Family are AMAZING.   We pray and keep the faith. John is like all of you, a very brave soul, even when he stuggles he will say "there are others who are suffer more". Very proud of my guy. We also have used ice packs, Urea cream (for hands and feet) He drinks lots of sport drinks and water (he did get dehydrated once, so keep drinking!) Eats yogurt, rice, pasta. Sherbet and gingerale taste very good to him.  I could use some help on better foods to feed him if any of your have any ideas, as he is not supposed to have raw foods because of "Leo" and would like him to have more nutrition. It really upsets me that the oncologists don't address nutrition more! Nausea seems to always be a problem. John was getting relief with the Pro-biotics and yogurt, but once the chemo built up in his system again, stomach pain got bad again, so this is where we are now. A gal on here said she tried everything then went to oxy and tylenol and that was the only thing that took the pain away. I just gave this to John so we will see if it helps.

This is the posting of a caretaker. I hope you all don't mind that I have joined from this perspective, and i hope that some of this helps you Vicki and others. Rectal cancer is a different beast then colon cancer we found out. As we talk to people we are finding that rectal cancer is out there, but like you said people are reluctant to talk about this type. Glad you are out there breaking the silence!

Vicki, sounds like you have a wonderful attitude!  Keep pressing on and through.

God Bless you, and each and everyone of you! You are all very special and amazing! Thank you for taking the time here to share.

See you around the board.

Your friend,

cher

Hi Cher.....

Welcome!! Your husband is lucky to have you as he moves forward through this journey. It sounds like so far you are adjusting well, but as I'm sure you know, we are all different so continue to post as questions arise.

I am 3yrs post treatment for anal cancer (stage 3b) and 2yrs post dx with breast cancer (stage 2).....that treatment is sort of on-going for now, but doing great all around.

I do however have a permanent colostomy so deal with some nutrition concerns. An illiostomyis a bit more difficult to work with as the output is more often and usually more liquidy. I too eat a lot of yogurt. Before the ostomy I thrived on fresh fruit and raw veges of all sorts but now very seldom even eat a fresh salad. If I do eat lettuce its in very small amounts, but as far as crunchy veges......almost never. I have gotten used to boiling or steaming most vegetables and still eat them daily but again just average to small amounts at a time. I make a lot of soups with a variety of healthy beans, potatoes, and other veges. Certain fruits are better than others. Bananas are no problem at all. I eat blueberries and strawberries with little issue but things like apples, pears, etc must be cooked or very ripe. When/if eating meat be sure it is tender and chew well. Nuts are a NO with most ostomies along with seeds or stringy veges and things that may not break down. I do eat nut butters. Some foods cause issues for one person but not another so best to keep a little mental note or diary of what goes well.

All of that being said, I had little appetite until several weeks after treatment ended and seems like I lived on yogurt, cheese sandwiches, and tomato soup. I tried to drink a bottle of something like Boost or Ensure each day, but was difficult for me. I had some minor complications and was hospitalized and put on TPN (a nutritional supplement via IV) for a while. Also, the pain was unbearable for me and was on a regular dose of oxycontin that helped tremendously and was able to wean off shortly after treatment ended.

I wish both you and your husband well, and will keep you in my thoughts and prayers as you conquer this together!

katheryn

In Treatment and new to this board

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