My Mom - Just Completed Chemo & Radiation (updated 10/27)

chrisfromny

Update as of 10/27
Hello everyone! I wanted to provide a quick update as to how things are progressing here. My mom took her first dose of oxycontin on the night of 10/25 (2 nights ago). Since then, we've seen a tremendous improvement in terms of her pain. She was up and around so much yesterday that I had to tell her several times to go lay down. She was clearly excited to be able to move around...but I didn't want her overdoing it. By around 3pm in the afternoon...her energy was pretty much gone. She stayed in bed for the rest of the night with the exception of a bit of energy around 9pm. Let's just say that it was the most exciting thing that's happened since her treatment ended.

She did vomit yesterday around 3pm...which happened to be about 30 minutes after she took her new antibiotic. She also vomited the day before at roughly the same time. We're going to try one more time today with this new antibiotic and see if she gets sick again. Nausea is listed as a side effect, but with all the other medication she's on...we don't feel like we know what's causing it. Aside from that one episode of vomiting, she's been able to keep all her pills down.

I was sleeping and she didn't wake me up when this happened, but this morning she said that in the middle of the night she woke up and couldn't get back to sleep so she turned on the TV. She said that she couldn't see the TV at all (it's very close to her bed)...and that it was all blurry. My first thought was the oxycontin since that's a new powerful addition to her mix of meds. It does say that blurred vision can be a side effect. She didn't know how long it lasted, but she wiped her eyes with a wet washcloth and after some point...she could see clearly again. She made it sound like maybe a half hour or so went by before she could see (but she couldn't see the clock to track time). I'm not sure why she didn't wake me up.

Has anyone else experienced similar side effects from oxycontin?

Along the same lines, she has not had a BM since she starting taking the oxycontin. I'm starting to get very worried about this, because I can't imagine how painful it's going to be when she finally does. The doctor had her stop (and we did) the anti-diarrhea medicine before starting the oxycontin.

Is there a point in time when we should consider doing something about the no-BM issue? We have no way of contacting the doctors again until Monday.

Finally...the storm (hurricane) Sandy is a comin'. We are in New Castle County, Delaware...and it looks like we're going to get a ton of rain and some decent winds. I'm putting all the patio furniture in the garage today...but we're in a condo complex so there's not really too much we need to do to get ready. We have a couple cases of bottled water, and I'm going to go to the grocery store today to try to find things that she can eat that don't need to be cooked. We do have a small gas grill...so if we do lose power (electric range) ... at least I can try to cook on that. Should be interesting. We received an automated call from the electric company and also have been following the news where they say that prolonged power outages are to be expected. I think it's mostly hype...but I'd rather be prepared.

Does anyone have any suggestions on "snack" or other foods that she can eat that don't need to be cooked (or stored in the refrigerator)? We have saltines and bread...that's about it right now.

Thanks so much!
Chris

---------------------------------

Update as of 10/25
I wanted to provide a quick update as to what's happened over the past couple of days for all the awesome supporters here. The past couple days have been quite a struggle. My mom is vomiting at least a few times a day. This morning, she had a temperature of 99.8. I called the chemo doc. and they wanted to see her. We were waiting to get bloodwork done until we talked to them, so luckily we were able to go to the hospital to get bloodwork and see the nurse all at the same time. No news on the bloodwork yet (which I'm assuming is good because it typically takes no more than an hour for the CBC results to come back), but the chemo nurse (actually the nurse practitioner...we had a nurse + her in the room) did prescribe her oxycontin in addition to the percoset to try to manage the pain. In addition to the new pain med, they have also put her on a 10 day course of antibiotics as a precautionary measure because of the fever.

Now I'm on to a whole different worry. (Always something, right?) My fear now is that she's not keeping the pills down long enough for them to be effective. I need to call the rad. onc. tomorrow...but I think I'm also going to call the chemo doc. to see if they have any suggestions. Within the past 24 hours, she's vomited twice within 30 minutes (or so) of taking her pills. I'm not sure what we can do to try to prevent that. She eats before she takes the pills (as much as she can, although admittedly it's not very much at this point), and she stays in bed after she takes them to avoid moving around. At first, she thought that moving around was causing her to feel sick to her stomach, but we've since realized that's not the case...or at least we don't think so.

Does anyone have any tips or tricks on the best ways/times/etc. to take pills so she has a better chance of keeping them down? I'm not sure if her getting sick is from the chemo ... or whether it's a side effect from the percoset.

Hoping for a semi-restful night tonight!
Chris

---------------------------------

Update as of 10/23
Hello again! Since you all have been so helpful, I wanted to provide a quick update. Last night was another rough night for my mom. From the looks of everything down there (literally) ... and from the pain ... she was starting to get concerned about whether the healing process had started, etc. She was also concerned about infection because of some leakage and the pain level. I spoke to the nurse at the radiation oncologist's office this morning about ways to further manage pain. The doctor asked to see my mom, so we went right down...

The doctor took a look and said that everything looks ok. It's still in a wet phase, so we're going to start sitz baths with Domeboro (if she can handle it). Hopefully that will expedite the drying process. He wasn't too keen on giving her anything other than more percosets...so that's what he did. He said she could supplement them with 600-800mg ibuprofen 3x/day. So we're going to give that a shot soon. She took a couple percosets when we got back...so in another half hour or so we're going to try the ibuprofen.

She was able to take a bath this morning (although it was painful) ... but she did make it through. We're going to try to do a bath every day or two, supplemented by the sitz bath. The doctor would like to see the sitz bath happen 3x/day.

Fingers crossed that she'll start healing and the pain will lessen. Her spirit was lifted when the doctor said everything looked ok, but I think deep down she wanted something that would have everything healed tomorrow I'm sure lots of people dream of that during this time.

Thanks for listening...and keep the advice coming!
Chris

---------------------------------

Originally Posted 10/22
Hello everyone! I'm so glad I found this forum, and look forward to discussing our current situation, and answering questions whenever I can.

To start, my mother was diagnosed with squamous cell anal cancer about two months ago. She lives in Delaware and I live in upstate New York, but I am fortunate to be able to work from just about anywhere...so I came down immediately after her diagnosis, then again for weeks 3-5 ... had a work trip week 6 ... and got back down the day after her last radiation treatment (treatment Friday ... arrived Saturday).

Her treatment consisted of 6 weeks of radiation with chemo on week 1 and week 5. Her dose and area of radiation were increased on week 3 because she started feeling a growth on the outside of her anus. The final diagnosis was Stage II anal cancer, although there were some differences in opinion of her team (anal vs. rectal) ... but it is being treated as anal.

(I'm trying to pass along as much information as I know...so my apologies for elaborating too much...or if you need more info to answer any questions...I'd be happy to answer them)

When I came on week 3, she was doing great. Going to work every day (although not necessarily a full 8 hour day), cooking meals, eating, fairly normal bathroom habits, etc. By the time I left at the end of week 5, I had taken over most of the household responsibilities as it was requiring pretty much all of her energy to go to treatment and work for a few hours. That's why I'm here!

So I left for a week on a required work trip (week 6) that I really couldn't get out of. I could have, but would have jeopardized my job, so my Grandmother came up and stayed for the week. I still feel bad about that, but she made it through.

So now I come back this past Saturday (the day after her last treatment) and things have really taken a turn for the worse. From all the research I've done (the doctors haven't really been forthcoming with information), it seems to be the norm that the first two weeks after treatment ends are the worst.

She spiked a fever of 102.3 in the middle of the night Saturday which broke about 8am on Sunday morning. She's been running a low grade fever of about 99 ever since. I've already called the chemo doctor and they don't seem to be overly concerned because it didn't last very long.

The real issue for her at this point is her BMs. They come unexpectedly, and she has multiple accidents per day. This has also occurred a couple times now where she loses control of her bladder as well. She was taking 2 pills of Immodium for the max of 8 pills/day, but that wasn't helping. Today, the chemo doctor started her on Lomotil, but we haven't really seen results from that yet. The doctor did say to give it a couple days.

Needless to say, her anus and surrounding parts are pretty much black and blue. It hurts so much when she has BMs that I sit in the dining room listening to the screams coming from the bathroom. It was burning when she urinated, but she's now taking Pyridium and that seems to be helping for the most part. She is to the point where she's unable to wear underpants of any sort...and is pretty much bedridden. In addition, even water burns...so it's difficult to keep things clean. All of the creams that the radiation oncologist gave her burn a lot. She was able to put the Silver cream on a couple times today...and that's the first time she's been able to use anything other than plain aloe or water.

Hopefully that's not TMI...but I wanted to give others who have gone through this a feeling of where she is right now.

Going forward, we have follow-ups with the colorectal surgeon (she hasn't had surgery but he's "responsible" for her care) next Tuesday and then the chemo doctor on Wednesday. The surgeon says that we won't know if the treatment was successful for another 5 or 6 weeks.

At this point, I'm concerned about two things. First, we need to manage the pain. She's been taking Oxycodone for the past couple weeks and that seems to take the edge off for an hour or two, but she can only take them every four. In addition, I'm worried about the long term addictive side of the pills...so hopefully we'll start weaning off those soon. Does anyone have any suggestions for things we can try to alleviate some pain in the meantime?

Second, how long will it take to recover and not be in so much pain? The blisters are terrible and I can't begin to imagine the pain she's in, but know from the screaming/crying/etc that it's pretty much unbearable. We have a trip planned (for my wedding) in early December that will require a flight and hotel stay. Do you think she'll be ok by then? It's been scheduled for two years and we can't change it without forfeiting the money...but I'll do that if it means she's able to attend at a later date. At this point we're just waiting to see how quickly she feels better before making any decisions.

Thanks for reading my rambling post...and I look forward to building relationships on this forum!

Thanks so much,
Chris

mp327

Hi Chris--
I'm so sorry your mom's diagnosis has brought you here. Everything you said about her pain is exactly what I went through--terrible burning with urination and BM's. I also had terrible diarrhea. I don't know how old your mom is, but I was 54 when I was diagnosed and in really good physical condition (except for the tumor in my butt!). My radiation doctor told me it would take about 3 weeks for me to see appreciable improvement in my skin, etc. However, it was only about 10 days and I was feeling much better. My hope is that your mom will make a quick recovery like I did. For relief from the burning, I would suggest soaking in the tub in lukewarm water. That gave me the most relief. While urinating, she might try squirting or spraying water on her genital area to dilute the urine and keep it from stinging. I understand that a peri bottle works very well for this. To help control diarrhea, plenty of white foods (rice, bread and bananas) may help slow things down. I would have her stay away from fresh fruits and veggies--way too much fiber this early (a bad mistake I made).

I wish your mom all the best. Believe me, recovery will happen. One day it will be like turning a corner for her and things will be much better. Just tell her to hang in there!

chrisfromny

mp327 said:

Hi Chris--
I'm so sorry your mom's diagnosis has brought you here. Everything you said about her pain is exactly what I went through--terrible burning with urination and BM's. I also had terrible diarrhea. I don't know how old your mom is, but I was 54 when I was diagnosed and in really good physical condition (except for the tumor in my butt!). My radiation doctor told me it would take about 3 weeks for me to see appreciable improvement in my skin, etc. However, it was only about 10 days and I was feeling much better. My hope is that your mom will make a quick recovery like I did. For relief from the burning, I would suggest soaking in the tub in lukewarm water. That gave me the most relief. While urinating, she might try squirting or spraying water on her genital area to dilute the urine and keep it from stinging. I understand that a peri bottle works very well for this. To help control diarrhea, plenty of white foods (rice, bread and bananas) may help slow things down. I would have her stay away from fresh fruits and veggies--way too much fiber this early (a bad mistake I made).

I wish your mom all the best. Believe me, recovery will happen. One day it will be like turning a corner for her and things will be much better. Just tell her to hang in there!

Thanks mp327!
Thanks for the reply, mp327!

My mom was 50 when she was diagnosed and just turned 51 last week. The pain and BM issues definitely are the hardest for her to cope with. She was told that she should see significant improvement within 14 days...but I think that's hard to digest now that things seem to be getting worse and not better. Patience is a virtue...but we're running out! It's great to hear that 10 days afterwards you started to feel much better.

At this point, taking a shower or bathing in lukewarm water is very painful. We got her a sitz bath (sp?) to put over the toilet...but even that is too much at this point. I will tell her about the squirt bottle when she's urinating. She uses one now to clean after urinating or a BM (with lukewarm water) and that seems to be pretty painful on it's own. The meds they gave her to help with the burning while urinating have turned her urine a very dark color (which has even stained the toilet seat despite cleaning it right after). So it's definitely very concentrated.

I've been making very plain white foods for her regularly now. That really helped during weeks 3-5, but doesn't seem to be cutting it the past couple of days. White rice and bread is pretty much what she's eating. Based on what I've been reading here, I started a food journal for her so we can keep track of what she's eating and what bothers her. It sounds like that may need to continue for years (possibly). The one thing she's been drinking is fruit juice and I keep telling her to steer clear. Since I'm the son and she's the mom...it's hard to really "put my foot down". I will have to be a bit more adamant about that.

My aunt celebrated her 8th year anniversary for breast cancer today...and I can't wait to celebrate these anniversaries with my mom, too.

Thanks for posting! Any other tips or tricks are most definitely appreciated!

Rej0328

Her pain
They put me on the fentonal patch. I can't remember how high the number was as they come in 25 and go up higher . I was worried about addiction also but the cancer dr told me we would deal with that later on. The most important thing was keeping me comfortable at the time. That way she doesn't have to take pills and the patches would last 12 hours. Good luck to you.

Rita

horsepad

your mom sounds like she is
your mom sounds like she is going through common side effects. I had major problems with bm's, severe burns, pain, uti's, low blood counts, dehydration, etc. The good thing -within a month from final treatment, your mom should be feeling better. Most of my problems started after I finished treatmet and only lasted about a month. I think most people do feel alot better within a few months after treatment. Best wishes to your mom and thank you for being there for her, I am sure she appreciates it more than you knpw. I will say a prayer for her. God Bless.

mxperry220

Aquaphor
I found Aquaphor ointment worked the best for me above any of the prescription ointments they gave me. This is over the counter you can get at Target, Walmart, CVS. As for foods I drank Ensure and ate white bread toasted cheese sandwiches and vanilla ice cream. The Ensure is rich in vitamins and minerals. I liked the banana flavor the best.

I well remember telling the radiation oncologist I hated to eat anything because I knew I would have immediate bouts of diarrhea. I had several accidents for several weeks after treatment. I am 3 years 9 months post treatment and still take immodium daily. I went from having 1-2 BMs daily to now 3-4 BMs daily but controlled. I found Advil worked best for me above any of the narcotic pain meds they gave me. Your mom might try non alcohol baby wipes and to blot not wipe her anus.

Quite honestly I could not have worked for several months after treatment. Fortunately I was retired when I was diagnosed with anal cancer. I was not comfortable getting too far from home for several months for fear of having an "accident" in public. I made sure I knew where the nearest restroom was in the store/business I went in because when the "urge" hit there was no holding it back.

Hope this helps some.
Mike

Marynb

chrisfromny said:

Thanks mp327!
Thanks for the reply, mp327!

My mom was 50 when she was diagnosed and just turned 51 last week. The pain and BM issues definitely are the hardest for her to cope with. She was told that she should see significant improvement within 14 days...but I think that's hard to digest now that things seem to be getting worse and not better. Patience is a virtue...but we're running out! It's great to hear that 10 days afterwards you started to feel much better.

At this point, taking a shower or bathing in lukewarm water is very painful. We got her a sitz bath (sp?) to put over the toilet...but even that is too much at this point. I will tell her about the squirt bottle when she's urinating. She uses one now to clean after urinating or a BM (with lukewarm water) and that seems to be pretty painful on it's own. The meds they gave her to help with the burning while urinating have turned her urine a very dark color (which has even stained the toilet seat despite cleaning it right after). So it's definitely very concentrated.

I've been making very plain white foods for her regularly now. That really helped during weeks 3-5, but doesn't seem to be cutting it the past couple of days. White rice and bread is pretty much what she's eating. Based on what I've been reading here, I started a food journal for her so we can keep track of what she's eating and what bothers her. It sounds like that may need to continue for years (possibly). The one thing she's been drinking is fruit juice and I keep telling her to steer clear. Since I'm the son and she's the mom...it's hard to really "put my foot down". I will have to be a bit more adamant about that.

My aunt celebrated her 8th year anniversary for breast cancer today...and I can't wait to celebrate these anniversaries with my mom, too.

Thanks for posting! Any other tips or tricks are most definitely appreciated!

Hi chris
I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to. If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

Marynb

chrisfromny said:

Thanks mp327!
Thanks for the reply, mp327!

My mom was 50 when she was diagnosed and just turned 51 last week. The pain and BM issues definitely are the hardest for her to cope with. She was told that she should see significant improvement within 14 days...but I think that's hard to digest now that things seem to be getting worse and not better. Patience is a virtue...but we're running out! It's great to hear that 10 days afterwards you started to feel much better.

At this point, taking a shower or bathing in lukewarm water is very painful. We got her a sitz bath (sp?) to put over the toilet...but even that is too much at this point. I will tell her about the squirt bottle when she's urinating. She uses one now to clean after urinating or a BM (with lukewarm water) and that seems to be pretty painful on it's own. The meds they gave her to help with the burning while urinating have turned her urine a very dark color (which has even stained the toilet seat despite cleaning it right after). So it's definitely very concentrated.

I've been making very plain white foods for her regularly now. That really helped during weeks 3-5, but doesn't seem to be cutting it the past couple of days. White rice and bread is pretty much what she's eating. Based on what I've been reading here, I started a food journal for her so we can keep track of what she's eating and what bothers her. It sounds like that may need to continue for years (possibly). The one thing she's been drinking is fruit juice and I keep telling her to steer clear. Since I'm the son and she's the mom...it's hard to really "put my foot down". I will have to be a bit more adamant about that.

My aunt celebrated her 8th year anniversary for breast cancer today...and I can't wait to celebrate these anniversaries with my mom, too.

Thanks for posting! Any other tips or tricks are most definitely appreciated!

Hi chris
I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to and I walked around naked for a week or two. . If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

Marynb

chrisfromny said:

Thanks mp327!
Thanks for the reply, mp327!

My mom was 50 when she was diagnosed and just turned 51 last week. The pain and BM issues definitely are the hardest for her to cope with. She was told that she should see significant improvement within 14 days...but I think that's hard to digest now that things seem to be getting worse and not better. Patience is a virtue...but we're running out! It's great to hear that 10 days afterwards you started to feel much better.

At this point, taking a shower or bathing in lukewarm water is very painful. We got her a sitz bath (sp?) to put over the toilet...but even that is too much at this point. I will tell her about the squirt bottle when she's urinating. She uses one now to clean after urinating or a BM (with lukewarm water) and that seems to be pretty painful on it's own. The meds they gave her to help with the burning while urinating have turned her urine a very dark color (which has even stained the toilet seat despite cleaning it right after). So it's definitely very concentrated.

I've been making very plain white foods for her regularly now. That really helped during weeks 3-5, but doesn't seem to be cutting it the past couple of days. White rice and bread is pretty much what she's eating. Based on what I've been reading here, I started a food journal for her so we can keep track of what she's eating and what bothers her. It sounds like that may need to continue for years (possibly). The one thing she's been drinking is fruit juice and I keep telling her to steer clear. Since I'm the son and she's the mom...it's hard to really "put my foot down". I will have to be a bit more adamant about that.

My aunt celebrated her 8th year anniversary for breast cancer today...and I can't wait to celebrate these anniversaries with my mom, too.

Thanks for posting! Any other tips or tricks are most definitely appreciated!

Hi chris
I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to and I walked around naked for a week or two. . If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

Dog Girl

Advice for your Mom
I so relate to the screaming while urinating or having a bm. I had my two siblings with me for about the last week of tx and then a week after tx. I would put a washcloth in my mouth to try to stifle the screams (and of course turn on the fan in the bathroom), but my sister told me afterwards that my big brother (older and 6'3"; 250+ lbs) would sit and cry when he heard me. Burns were my worst part of tx and I had to go on oral morphine around the clock for about 10 days. I'm usually very sensitive to medicine, but I ended up needing 2 slow release tablets/day and then immediate release tablets every 4 hours around the clock. She will have to ask for better pain relief however as doctors are understandably not going to offer stronger meds unless lesser meds are not doing the job.

While I did not try this (this forum wasn't up when I went thru tx in 2009), others have recommended dermabliast I believe it is called. I think this is OTC and is used on new mothers after giving birth. If she can lie on her bed with her bottom exposed and a fan turned towards her that may help. I personally used Aquaphor a lot along with the Silverdene. And I just wore gowns and went commando. I used white towells wherever I sat as they would be easy to wash and bleach if I leaked a little blood or stool. Just have her pull up her gown when she sits down; she will still be covered, but it will save her from having to change her gowns a lot. (Hope this isn't too much TMI back atcha!) As others have said, healing does start fairly quickly. She's just going to have a rough few days and there's no denying that.

As for food, I never lost my taste for cold diary (milkshakes, cottage cheese, yogurt), and I know that Greek yogurt has a lot of protein which is very important in the healing process. I don't know what the probiotics would do, so you may want to research that. You can put honey in the plain Greek yogurt which makes it a bit more palatable. I will
keep your Mom and you in my prayers.

AZANNIE

Hi Chris
I can so relate to this. I'm so sorry your Mom is in pain. I was prescribed xenaderm for my burns. It's was a prescription ointment prescribed by the wound care nurse. I was blistered. I was told the xenaderm might burn at first, but it didn't and it helped. Lomotil gave me relief from the frequent and urgent BMs. Things started getting somewhat better about two weeks after treatment.
Wishing your Mom a speedy recovery!

Ann

chrisfromny

Marynb said:

Hi chris
I am so sorry about your Mom. She is blessed to have her son with her to help her. I would suggest the same squirt bottle and sitz baths that Martha did. You Mom has to stop the fruit juice! She should be drinking only water, and lots of it! That will dilute the urine so it doesn't sting. Also, the following was suggested to me by the hospital and it worked very well. Get the blue powder that they put into aquariuma and put 2 teaspoons in a room temperature sitz bath and soak her bum for 15 mins. Several times a day. Yes, it hurts at first, but will soothe her very quickly. Also, a hand held shower with room temperature at low setting a few times a day. I took only tylenol at night. Lotions and creams only made things worse for me. She needs to eat foods that are not acidic....no more juice! She should heal very quickly when the healing starts. Also, lean protein promotes healing. Many of us dealt with this alone, so we were free to scream if we had to and I walked around naked for a week or two. . If all goes well, she should be fine to travel by December....

Hang in there! You sure are a good son! I did not want to upset my daughter, so I told her I was doing fine. I never wanted her to see me like that.

Hugs to you and your Mom

Mary

Thanks Marynb
Thanks for the info Marynb! She's officially off the juice now and she's only going to be drinking water. She gets bored of it quickly...but if that's what is going to help...then it's definitely worth it.

Can you elaborate on the blue powder for the sitz bath?

I'm going to call the radiation oncologist here shortly to see if she should just stop all the creams. They definitely seem to cause irritation more than anything.

We've been eating mosting white bread and white rice. I'll make her some chicken tonight for dinner and see how she handles that. I never knew that lean proteins helped healing. Thanks for that!

Thanks again,
Chris

chrisfromny

Rej0328 said:

Her pain
They put me on the fentonal patch. I can't remember how high the number was as they come in 25 and go up higher . I was worried about addiction also but the cancer dr told me we would deal with that later on. The most important thing was keeping me comfortable at the time. That way she doesn't have to take pills and the patches would last 12 hours. Good luck to you.

Rita

Thanks Rej0328
Thanks for the info about the fentonal patch. I plan on calling the radiation oncologist this morning...and will definitely ask about the possibility. Having something to take the edge off for a consistent 12 hours would be great!

Thanks so much,
Chris

chrisfromny

horsepad said:

your mom sounds like she is
your mom sounds like she is going through common side effects. I had major problems with bm's, severe burns, pain, uti's, low blood counts, dehydration, etc. The good thing -within a month from final treatment, your mom should be feeling better. Most of my problems started after I finished treatmet and only lasted about a month. I think most people do feel alot better within a few months after treatment. Best wishes to your mom and thank you for being there for her, I am sure she appreciates it more than you knpw. I will say a prayer for her. God Bless.

Thanks horsepad
Thanks for the prayers, horsepad. It's great to have a community of people that understand what she's going through. We're hoping that she starts to see some significant signs of relief in the next week or so. She's pretty much at her wits end when it comes to the pain!

Thanks,
Chris

chrisfromny

mxperry220 said:

Aquaphor
I found Aquaphor ointment worked the best for me above any of the prescription ointments they gave me. This is over the counter you can get at Target, Walmart, CVS. As for foods I drank Ensure and ate white bread toasted cheese sandwiches and vanilla ice cream. The Ensure is rich in vitamins and minerals. I liked the banana flavor the best.

I well remember telling the radiation oncologist I hated to eat anything because I knew I would have immediate bouts of diarrhea. I had several accidents for several weeks after treatment. I am 3 years 9 months post treatment and still take immodium daily. I went from having 1-2 BMs daily to now 3-4 BMs daily but controlled. I found Advil worked best for me above any of the narcotic pain meds they gave me. Your mom might try non alcohol baby wipes and to blot not wipe her anus.

Quite honestly I could not have worked for several months after treatment. Fortunately I was retired when I was diagnosed with anal cancer. I was not comfortable getting too far from home for several months for fear of having an "accident" in public. I made sure I knew where the nearest restroom was in the store/business I went in because when the "urge" hit there was no holding it back.

Hope this helps some.
Mike

Thanks Mike!
I will also ask the radiation oncologist about Aquaphor. She's tried many different OTC and rx ointments so far to no avail. She actually believes they are making things worse...although having never been through this before, neither of us know what's "normal" and what's being irritated by something she's doing. I think that's a major issue right now - she's worried she's making it worse.

The Ensure idea is great. We did buy some for her before this all started, but she's kept her appetite and loves her juice...which we now know is totally backwards. We're switching to all water for liquids...and we'll do the Ensure for vitamins and minerals! She loves bananas...and that's on the OK list for her diet...so I will run out and pick up that flavor.

I'm not going to tell her about the possibility of needing immodium for a while. I think that would just upset her unnecessarily. One step at a time at this point, but I'll keep that in mind as we move forward.

She is planning on going back to work either next week or the week after. She has a great support group at work, and if she's able to stay for only a couple hours...it'll make her feel better that she's contributing. She wanted to go back next week for sure...but I've since steered her away from making that promise.

We tried the non alcohol baby wipes and blotting technique...but that was way too much for her. We haven't tried that in a few days...so maybe we'll try that again here in the next day or two.

Thanks so much!
Chris

chrisfromny

Dog Girl said:

Advice for your Mom
I so relate to the screaming while urinating or having a bm. I had my two siblings with me for about the last week of tx and then a week after tx. I would put a washcloth in my mouth to try to stifle the screams (and of course turn on the fan in the bathroom), but my sister told me afterwards that my big brother (older and 6'3"; 250+ lbs) would sit and cry when he heard me. Burns were my worst part of tx and I had to go on oral morphine around the clock for about 10 days. I'm usually very sensitive to medicine, but I ended up needing 2 slow release tablets/day and then immediate release tablets every 4 hours around the clock. She will have to ask for better pain relief however as doctors are understandably not going to offer stronger meds unless lesser meds are not doing the job.

While I did not try this (this forum wasn't up when I went thru tx in 2009), others have recommended dermabliast I believe it is called. I think this is OTC and is used on new mothers after giving birth. If she can lie on her bed with her bottom exposed and a fan turned towards her that may help. I personally used Aquaphor a lot along with the Silverdene. And I just wore gowns and went commando. I used white towells wherever I sat as they would be easy to wash and bleach if I leaked a little blood or stool. Just have her pull up her gown when she sits down; she will still be covered, but it will save her from having to change her gowns a lot. (Hope this isn't too much TMI back atcha!) As others have said, healing does start fairly quickly. She's just going to have a rough few days and there's no denying that.

As for food, I never lost my taste for cold diary (milkshakes, cottage cheese, yogurt), and I know that Greek yogurt has a lot of protein which is very important in the healing process. I don't know what the probiotics would do, so you may want to research that. You can put honey in the plain Greek yogurt which makes it a bit more palatable. I will
keep your Mom and you in my prayers.

Thanks Dog Girl
I definitely plan on discussing pain relief today with the rad. onc. With all of the drugs that are out there...you'd think there would have to be something to control the pain.

She pretty much spends 95+% of her time in bed with her bottom exposed. She's just about to the point where there are no gowns. When she does get energetic she'll put one on...but for the most part it's totally commando from the waist down. Let's just say I've seen more than I ever cared to

She does lay on a towel so that when she leaks...there's something there that we can easily wash. I'll recommend switching to the white towels so we can bleach them. We've destroyed quite a few articles of clothing and towels, etc. so far...but I just tell her that's nothing in the long run.

We bought vanilla yogurt but she doesn't really seem to be much for it. I'll have to get some plain greek yogurt and some honey...maybe she'll be more into that. She does really like sweet things. Vanilla ice cream is her favorite these days...although I'm not sure if that's irritating her GI tract or not.

Thanks for all the insight!
Chris

chrisfromny

AZANNIE said:

Hi Chris
I can so relate to this. I'm so sorry your Mom is in pain. I was prescribed xenaderm for my burns. It's was a prescription ointment prescribed by the wound care nurse. I was blistered. I was told the xenaderm might burn at first, but it didn't and it helped. Lomotil gave me relief from the frequent and urgent BMs. Things started getting somewhat better about two weeks after treatment.
Wishing your Mom a speedy recovery!

Ann

Thanks Ann
Thanks for the comments Ann. Although I'd never wish this on anyone, it's nice to hear from people who have been in the same situation. I haven't heard of the xenaderm ... but will definitely ask about it. Even water burns at this point, so my guess is that any cream will too (they all have so far) ... but anything that speeds up the healing process is worth it so long as she can stand it.

I'm hoping the Lomotil works, too. So far this morning we've been diarrhea free!

Thanks so much,
Chris

Lorikat

Bless you Chris for being
Bless you Chris for being there with your Mom! I remember those screams as well.... My daughter came home to take care of me the week I returned home from MD ANDERSON. She was worried about my burns not being cared for properly as I came home and ended up in isolation at our local hospital needing blood transfusions and with neutropenia. She stayed isolated with me and did ALL the wound care on ALL OF MY BURNS FRONT AND BACK! I told her I was sorry she had to see my "everything" and her response was "hmmmmm, must not have been paying attention, I don't remember seeing ANYTHING".

Anyway, it has been one year since treatment and I have my 12 month scans on Halloween! I went white water rafting in June, liked it so much went back in July. I guess I'm saying I MADE IT THROUGH! And so will your Mom, God willing..... Lorikat, packing for Houston!

chrisfromny

Lorikat said:

Bless you Chris for being
Bless you Chris for being there with your Mom! I remember those screams as well.... My daughter came home to take care of me the week I returned home from MD ANDERSON. She was worried about my burns not being cared for properly as I came home and ended up in isolation at our local hospital needing blood transfusions and with neutropenia. She stayed isolated with me and did ALL the wound care on ALL OF MY BURNS FRONT AND BACK! I told her I was sorry she had to see my "everything" and her response was "hmmmmm, must not have been paying attention, I don't remember seeing ANYTHING".

Anyway, it has been one year since treatment and I have my 12 month scans on Halloween! I went white water rafting in June, liked it so much went back in July. I guess I'm saying I MADE IT THROUGH! And so will your Mom, God willing..... Lorikat, packing for Houston!

Thanks Lorikat
Congratulations on your one year! I'm praying that everything goes well...I know it will! I can't wait for her to be able to do something fun. I know it hasn't been very long since her last treatment, but she's definitely going stir crazy already. At this point, she's really looking forward to eating a good meal - including all the things she hasn't been able to eat for a while now. I think that will take quite a while to happen though.

Have a safe trip to Houston! Thanks for posting
Chris

mp327

chrisfromny said:

Thanks Dog Girl
I definitely plan on discussing pain relief today with the rad. onc. With all of the drugs that are out there...you'd think there would have to be something to control the pain.

She pretty much spends 95+% of her time in bed with her bottom exposed. She's just about to the point where there are no gowns. When she does get energetic she'll put one on...but for the most part it's totally commando from the waist down. Let's just say I've seen more than I ever cared to

She does lay on a towel so that when she leaks...there's something there that we can easily wash. I'll recommend switching to the white towels so we can bleach them. We've destroyed quite a few articles of clothing and towels, etc. so far...but I just tell her that's nothing in the long run.

We bought vanilla yogurt but she doesn't really seem to be much for it. I'll have to get some plain greek yogurt and some honey...maybe she'll be more into that. She does really like sweet things. Vanilla ice cream is her favorite these days...although I'm not sure if that's irritating her GI tract or not.

Thanks for all the insight!
Chris

Hi Chris--
On thing you mentioned in your post to Dog Girl got my attention. Although ice cream may taste really good to your mom right now, it may be very hard for her to digest and could be contributing to her diarrhea issues. Yogurt would be a much better choice, as it has the bacteria that is good for regulating the gut. Just a thought!

chrisfromny

mp327 said:

Hi Chris--
On thing you mentioned in your post to Dog Girl got my attention. Although ice cream may taste really good to your mom right now, it may be very hard for her to digest and could be contributing to her diarrhea issues. Yogurt would be a much better choice, as it has the bacteria that is good for regulating the gut. Just a thought!

Thanks mp327
Thanks for the advice, mp327!

She's stopped eating it for now and we'll only reintroduce items one at a time (I'm sure ice cream will be one of the first she tries to reintroduce). The new meds from the chemo doc definitely seem to be working. She hasn't had any diarrhea at all today, yet. I think, based on the advice here, she's seeing an improvement from the new rx, but also by stopping the intake of fruit juice (she really was drinking quite a bit).

We're delaying adding items at the moment, but I'll definitely keep this in mind when/if we reintroduce the ice cream!