Thank you for being here ...from a newbie!

Welcome, but as it seems I say way too much, so very sorry that the need to welcome another is here. That being said, so very thankful that we are here for each other.

I was dx with Stage3b 3 1/2 years ago. I too was hospitalized early on and eventually was admitted to a nursing home temporarily. (I do have an ostomy and the radiation had caused some complications and this was my best option at the time) None the less, personally I am thankful that I was not working at that point as there is no way I could have. I know some who have adjusted their work schedules to shorter days and part time hours and somehow managed to tough it out, but my advice is that if at all possible try to take a leave.

If this is not an option, when not working focus on rest and nutrition, and almost nothing else. This treatment is brutal, but we (and you) are strong and one day soon this will be in your past.

I was not aware of this forum during treatment, and you are so right, I should have been learning things from my medical team.....but unfortunatly there seems to be little communication regarding treatment of side effects, so glad you are here! Do not hesitate to ask anything that concerns you, as you have seen there is nothing off limits and usually someone will have some helpful hints. For now, stay hydrated, eat lots of protien for healing such as greek yogurt, rest when you can, sitz baths and hand held shower heads are extremely helpful on a sore bottom, and for me, a regular pain med routine was a must.

Congratulations on the first leg of this journey.......one day at a time and soon you'll be there!

katheryn

I'm sorry you've had to find your way here, but as you can already see, the support is wonderful.  While this treatment is relatively short, it is brutal, which is, IMO, why the doctors are hesitant to give patients too much info ahead of treatment, knowing that some people will not go through with it.  However, there are plenty of us here who went through it, survived it, and are now thriving.  It has a high success rate, so hold onto that, knowing that once you are on the other side of it, you will be rid of this disease.  I am a 6-year survivor.

Since it's been such a long time since I went through this treatment, some of my memories of it have faded.  Therefore, I hesitate to give too much advice these days.  However, one very important thing is to stay well-hydrated.  It's very important.  You may find some great tips on dealing with side effects on this site:

                                                                                  www.analcancerhelp.info 

It gives some great information, compiled by a survivor, based on tips from lots of other survivors.  I hope you'll find it to be a good resource.

As for leave from work, I can't really speak to that.  I was fortunate in that I was not employed at the time of diagnosis.  I know some people continue to work through this, but others cannot.  I would not have been able to.  I hope you can work something out with your employer.

I wish you all the very best and hope that you'll keep us posted on how things are going for you.  There will be tough days, just as you've already found out, but take it one day at a time and soon you'll be crossing the finish line.  I wish you all the very best.

Martha

Hi and welcome. I chuckled at what you thought was a rant. Stick around:-) We have had ranters (sometimes moi) and apparently you aren't one of them. That you can be so clear and concise at this stage of treatment you are in, when you must be terribly uncomfortable is truly remarkable.

It sounds like you need to give yourself permission to be putting Rest, doctors appointments, treatments and more rest first in your life. If nothing else follows, that's because you may just not have enough energy or concentration for anything else. 

I attended an MSKCC conference on Anal Cancer and they said it is the most "hellish" treatment they give there (primarily because of lack of research on better, less brutal and effective treatments). But the good news they went on to say is it is highly effective and does not last as long as other cancer treatments, like Breast Cancer, which truly is a nightmare to behold.

Breast Cancer patients, though, by contrast, seem to have treatments that allow them to continue working. So it's hard not to be compared or to compare ourselves with this cancer survivor or that cancer survivor but it's all about the treatment. You also were very sick when you were diagnosed. You didn't get that sick over night and it will take a while to get well. 

I look back on it and before my diagnosis, realize that I was working in agony, drinking more wine to keep going with dinner preparation, clean up, etc. after a long day, trying to be the person I was for my husband but nothing worked. Not only my health but my marriage was crumbling. I was really in pain down my legs, sick a lot with lung inflammations, irritable from the steroid treatment and much like you, very ill before I passed blood and with great relief called my GI for help. Some people think it's horrifying to get a definitive symptom like that, but for me it was really a relief. Even thinking I might die was a relief.

But you, like the rest of us, are on the recovery road now and that needs to be first and foremost. We all want you to love yourself, and put your self first without guilt. Learn to ask for help. Everything will fall into place. Three years later, I realize how much better life is for me now, even my marriage, my weight, my exercise program, my friendships and my much treasured sobriety as much as I loved wine and/or cocktails. Because they have no nutritional value, they are out and I don't miss them.

Good luck. Hang in there and please, stay close to us.

All the best,

Sandy

Greetings, Missy3, so sorry to meet you here!

But now that you are here, I understand what you say about being ill prepared. The radiation oncologist gave me a lot of literature to read from the NIH, etc, and even that bypassed or only light touched on some of the appalling side effects. I think that we should be assigned a "cancer mentor" or "cancer buddy" if only to tell us that what we are going through isn't unexpected. Short of that, this forum fills the role. I think the medical professions get kinda jaded because they deal with cancer treatment every day and it's the same-old same-old to them. They forget what a foreign territory it is to most of us.

My oncologist won't talk about what's next if the chemo/radiation fails because "it's something that I may never have to think about".

I wasn't working, either, but remained in absolute awe throughout of other cancer patients I met that were abole to drive themselves to appointments and then went off to work. The kind of cancer and treatment prescribed make the big difference.

My radiation oncologist told me that pelvic and head/neck radiation are the most brutal areas to be treated. (One patient of his that I met had cancer of the tonsils - his burns, both inside and out, were horrifying. He could barely speak or swallow and had thick, tenacious mucous to try to cough up constantly. He lived on Boost for months. So, anal cancer patients aren't alone.) The doctor told me he'd gladly take a job flipping burgers if it meant that no one would need radiation treatment anymore.

If you need to take time off from radiation, don't worry. Do what you need to do. It's the total amount of radiation received; it's not a race to the finish.

eithaK is absolutely correct when she says that rest and nutrition are your priorities. There will times when you have to force yourself to get essential foods and fluids in. I read a big article on sleep science in Time Magazine a few years back. Your body cells heal themselves only during sleep. So, lie down already!

I was hospitalized three times for neutropenic fevers, receiving multiple IV antibiotics. My WBC was down to 0.2 at one time in spite of receiving Neupogen daily (my bone marrow took a vacation). The skin on my bumper sloughed off in bloody sheets. I expelled many, many industrial drums worth of neon yellow watery enteritis stools over several months. For a brief time, I was on morphine before I could cut back down to Fentanyl. During my last hospitalization, I received two units of whole blood and 2 of platelets. I felt like an engorged tick!

No, I was very unprepared and felt utterly alone. But the thing of it is that there are people who have it even worse. And there are those who have a much easier time, too. I hope you are one of those.

Recovery is no picnic, either. It's taking much longer to recover than I naievely thought it would. I am getting cancer rehabilitation through the hospital's outpatient PT department. While my body is getting stronger, it's my "working memory" that worries me. The speech therapist says that my memory seems to be intact, but my ability to access memories has been mildly disturbed, though it feels to me like it's been disturbed a lot! It's called "chemobrain" and can effect a sizeable percentage of patients. Who knew?

The American Cancer Society has a whole section on anal cancer:  http://www.cancer.org/cancer/analcancer/index And here's another resource for anal cancer information, the HPV and Anal Cancer Foundation http://www.analcancerfoundation.org/

I hope you don't have to worry about any of these side effects I had or the even nastier ones others have had, but if you do, you aren't alone and as sick as you may feel, you can and will live through it. You have a great chance at recovery!

Virtual kisses, chocolates, and orchids.

jcruz said:

so much good advice

Ouch_Ouch_Ouch

Just wanted to say thank you for sharing your story and your advice to Missy3.  Sounds like you got all of the worst case scenarios during treatment.  I am sorry you went through such awful times.  My med onc. said the same thing as your rad onc. about cancer treatment for the head/neck and pelvis areas. 

The very neutral language used in the literature about anal cancer is just that - neutral.  They don't say brutal that I can recall.  I browsed this board a little before my treatment began and I was so scared reading a few posts that I just had to stop until after I was done.  I think I was better off sticking my head in the sand.  That's not for everyone though.

My med. onc. asked me if I would be a resource for another anal cancer patient if one expressed interest in talking with someone who had been through it.  Of course I said yes.  I haven't yet been contacted but I will do my best if asked.  I think that's what we do here and I would want to do that on a one-to-one basis.

Janet

Thanks for the kind comment, jcruz.

However, I know of a woman who had anal cancer and was prescribed the standard protocol - Mitomycin, 5-FU, radiation. But after her first dose of Mitomycin, she ended up in an ICU on life supprt for 2 weeks and has no memory of the events. She was put on another chemo med (can't remember what), and has survived. Another person from this very forum said that following treatment, she had to go to an inpatient rehab center for 2 or 3 months. She was weak and put on TPN nutrition given via her medi-port. She seems to be much better now. So, things can get worse.

But I have to say that although I felt very sick when I had rheumatic fever, it doesn't hold a candle to cancer treatment side effects. Yuck!

CORRECTION: . . .she had to go to an inpatient rehab center for 4 WEEKS.

Missy3 said:

To All

Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

Thank you guys again for having such big caring hearts xoxo

 

Do not worry about thanking us all, right now your focus must be on getting through treatment.  You will get the chance to pay it forward someday when a newbie comes along who needs your good advice based on your experience. 

Your side effects sound very similar to mine, except I had extreme diarrhea.  I did not take enough pain medication to give me any relief from my pain because I was driving myself to treatment most days and couldn't be loopy from the drugs.  That was one of my biggest mistakes.  I would say take as much of the pain medication as you can safely do.  Do not worry about work or anything else, just get on top of the pain and stay on top of it. 

My appetite went completely away too.  Towards the end, I was down to eating Ramen noodles every day and not much else.  It seemed that the saltiness of them tasted okay to me--not good, but tolerable.  I could not look at another bottle of Boost by the end of treatment!  Eat what you can and keep up with the fluids--that's very important, as you know.  Take care and know that we are all in your corner cheering you on.  I know you can do this!

Martha

Missy3 said:

To All

Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

Thank you guys again for having such big caring hearts xoxo

 

I will be thinking of you as you start your next chemo round and on into the final stretch of radiation treatments.

I remember both rounds of chemo completely knocking me flat and I was way more nauseous with the second round than the first.  I really hope you will do better than that.  My fatigue just kept building toward the end.  I gave in and watched a lot of movies and tv shows, lay in bed listening to music or just sleeping.

If anything tastes good and doesn't aggravate your digestion just keep eating it.  I knew to stay well away from insoluble fiber but that was about it for paying attention to my dietician's advice.  My go-to source of protein was a shake I made with whey protein, milk, full-fat greek yogurt and frozen fruit.  Most of the time it was mango.  Unfortunately I detest bananas so the frozen mango was a good subsitute.  I was lucky not to lose my appetite completely but I only ate what appealed to me - baked potatoes, pasta, mango sorbet, toast with peanut butter, I can't remember what else but not much variety.  I tried both Ensure and Boost and found them to be so sweet and nauseating I couldn't drink them.

By the end of treatment I was taking 40 mg of oxycontin and had 5 mg of oxycodone to take for breakthrough pain.  I still wasn't painfree but I could live with it.  I advocate for taking the meds as much as you need to and then deal will weaning off of them later.  I took them for 3 months after treatment because of ongoing pain and then weaned of over about 6 weeks.

Janet

Dearest Missy:

* I had a side effect where many odors left me incapcitatingly nauseated and gagging uncontrolably. The hospital was bad. It had new Pergo-like floors and cabinets. All that plastic laminate odor was too much. The cleaning solutions were awful. The smell of my own enteritis stools got to me. I had to be discharged before they wanted me to. If you have access to an aroma therapy program, utilize it. If not, then peppermint oil (not flavoring from the supermarket, but the essential oil from a health food shop) will mask any noxious odors. Keep a small dish of cotton balls soaked with it near you. Keep a little jar of soaked cotton balls on you for trips to the infusion center or radiation. I reacted strongly to saline flushes through my port (smelled to me like model airplane glue). Regular IV normal saline didn't bother me, so I think the flushes must have a preservative that got to me.

* I had a metallic taste in my mouth for a long time that effected the flavors of food in unpredictable ways. I now have the taste of a bitter blade of grass; iit's minor, but not pleasant.

* Try NOT to loose weight as it will not be from fat loss, but from muscle mass loss. That will make you even weaker.

* - It's difficult to drink too much fluid while you are being treated, but it's very easy not to drink enough. Your kidneys need the help filtering the chemo (it sticks around in your body a lot longer than you might think) and to prevent dehydration from vomiting and/or diarrhea. If you cannot keep up your fluids, go to your infusion center for hydration through your port. I went about 4 times, but there were some patients there who had to go in daily. Ask the MD/infusion staff/Dietician how much to drink every day and do your best.

   - I found that Boost's "rich chocolate" flavor was good to me and remains so. Experiement with different brands and flavors because you will need supplementation even during the recovery phase.

   - I still have some left over baby food jars! They are simply cooked foods that are easily digested.

   - Avoid fiber: eat white toast, not wheat. Cut way back on cooked fruits and veggies and by no means eat raw fruits or veggies. Your GI tract is too inflammed to tolerate them and may remain so.

   - Do NOT drink carbonated beverages until they are completely flat. Carbonation is another source of irritation. I didn't find out until my abdomen was very sore and distended. Beverages with citric juices may be way too irritating, too.

   - Try chicken noodle soup. If the regular stuff is too salty, Campbells has a lower sodium variety.

   - Increase calories wherever you can. Instead of using margarine on your white bread toast, use butter. Add a dollop of cream to your soup or scrambled eggs. Like that.

   - Many people eat Greek yougurt (the real stuff contains more protein than regular yogurt). Real Greek yogurt will not have any thickeners. If the label says there's carageenen or any other thickeners, then it's not real Greek yogurt and likely will not have that extra protein.

   - Ice cream wasn't bad for me. I also used it to make shakes with added protein powder.

   - Eggs are excellent. Prepare them simply - poached, hard boiled (makes a good snack, too), sauteed scrambled eggs cooked in butter (no veggies), cheese and saltines (if you can tolerate cheese).

   - Eat every 2 hours or so. They don't have to be actual meals, but can be snacks to get you to the next food time. Carry snacks with you everywhere. I am almost 3 months post treatment and if I go too long without eating, I get very shaky. Good old Boost comes in handy!

   - Puddings (if lactose intolerant, watch out for all the milk), Jello, cooked applesauce without skins, saltines and cheese, peanut butter, hard boiled egg, baked/boiled potato (high in potassium; don't eat the skin), pasta and butter with grated cheese (no high fiber brands), your Dietician can help you identify other foods.

   - Don't pile on the portions. I found that too much food on the plate was a real visual turn off. Go back for more when you finish.

* Don't use Silvadene on your burns if you are allergic to sulfa drugs, like me. Don't use Aquaphor if you are sensitive to lanolin, like me. Albolene is similar, but without the lanolin (has mineral oil, petrolatum, parrafin, ceresin, and beta carotene only; it's recommened by many aetheticians and plastic surgeons for healing after facial procedures).

* Regular undies with elastic waist bands and leg bands may become too irritating against burned skin. Some people wear boxer shorts, more expensive undies with woven waist and leg bands, or nothing at all when resting at home.

* Pain management was mentioned above. Pain is extremely stressful; do not wait until your pain is severe. Stop it ASAP. Likewise, stay on top of nausea. Don't let it overwhelm you before taking your meds. If you don't have good pain or nausea control, call your MD and insist on adjustments.

* When not eating, sleep, and sleep, then sleep.

Missy3 said:

So much wonderful information

I had to read and re read all this wonderful info. It is filled with such valuable information that I am trying to figure out how to store it in my favorites for continued reference.  I wish there was a way to have sticky notes at the top of each forum for valuable info such as this.   Could keep it organized and easy to find.  

 I need to keep the info accessable as everything is moving so fast and is overwhelming my brain bank storage. Not to mention its a bit foggy in there too 

Well a new symptom is insomnia.  I am laying in bed with my chemo beside me at 2:30am.   with all the nausea and just plain yucky feeling to add to the intense pain from radiation burns    

This last visit to rad/onc determined it was time to turn the pain meds up a notch. I am now on fentanyl patches around the clock with hydrocodone for break through pain.  Threw in a little Ativan to help me relax from the stress of nausea and insomnia.    Pills can only do so much though.  Sometimes waiting it out is what we have to do.  Hope I am making sense.  At least I am a little mellow right now. 

 

Since i I am not sleepy maybe this would be a good time to let you know more about me:)

 

i am 58y old and I work as a nurse in healthcare. I have worked at my current facility for 22 years.  

i do love where i work and the people that I work with. My background is surgical nursing and supervisory roles. 

I would like to interject here that none of my background even remotely prepared me for this treatment course. I am as sincere as I can be that I became more prepared by coming here to this forum than all my investigating and talking to those in midst of my care.  I am convinced that this is such a rare cancer and the treatment even though is streamlined and protocols followed precisely ...... Can't touch the insight which comes from actually living it. 

I have some thoughts to help make the process better for the next group behind me. I have been talking to my rad/onc nurse and offering suggestions already.  She is very receptive.  But  I told her that I have a long way to go before I feel mature enough in my experience to form a plan.   

Without a doubt.....,, I will be hanging out here for a bit because I feel very comfortable and comforted!

i did go back and read what I could,on all of you guys to kind of get an idea who everyone is and what you journeys have been like.   All I can say is may God bless you all for all you are giving back.  you come here to give back because you care and I want you to know that you are wonderful!!!'

thanks for listening to my rambling.   Starting to get sleepy now!!!!  

cant miss tomorrow it is tx # 21 yah!

Missy xoxoxo

You are right--the doctors and nurses who have not been through this treatment are usually lacking when it comes to giving out the best information on how to deal with side effects.  You've gotten some very good information here that your healthcare team either doesn't know or doesn't have the time to discuss with you.  I was on no support sites when I went through treatment and how I wish now that I had been!  It would have saved me from a lot of pain.  I was so naive about everything.  Most of what I've learned since then has come from the good advice from others who have had this treatment.  I think the people on this site are wonderful too and we do look out for each other.

You are over half-way through treatment now, so hang in there and keep the finish line in sight.  You can do this!

Martha