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

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

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

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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

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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

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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's picture
mp327
Posts: 3077
Joined: Jan 2010

I will be praying for all of you that you may stay safe, dry, warm, and not be in the dark!

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for posting, Mary! It looks like it's going to be pretty nasty here...and all over the northeast for that matter. I'm still think they might be hyping it up a little bit to get viewers/listeners/etc...but I did get to the store yesterday and stocked up. I think I bought the last 2 D batteries in all of New Castle County! So at least we'll have a flashlight that works. She has lots of candles here too...so we should be good to go.

Your list of food sounds pretty much like what I bought...minus the boxes of milk. I never even thought of that! My thought is that at least a day or two after the storm...there will be some place open that we can get food from if we need it. We have a decent amount of non-perishables...and tough times call for tough measures...so we'll make do :)

We're lucky that she lives in a Condo complex...so there wasn't too much for us to do to get ready outside. I moved all of her patio furniture and garden decorations into the garage. Same with her little grill. It's nice to know I'll have that to cook on if we lose power since her stove is electric!

Stay Safe!
Chris

Marynb
Posts: 1134
Joined: Aug 2012

I am so glad your Mom is on the road to recovery! That is terrrific! Well, it is dark and tropically muggy here today. I started bringing in the deck furniture, but I am not very strong so I have to do a little at a time. I went to the store yesterday and could not get any bottled water...sold out. I am going to venture out again in a few minutes. The problem we have in New England is that the trees still have leaves and they overhang electric wires. It seems every time there is the least little breeze, we lose power for a week! National Grid is reeally bad here!

Seems the cat senses something because she is following me around the house, crying. This week is my oncology team meeting and I hope it is not postponed....but if it is, I will deal.

Hang in there and. am so glad your Mom is feeling better!

Let me know if the storm gets bad there. I may have to evacuate !

Mary

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Oh boy! I hope you're staying safe and can find water. I have National Grid at home (near Albany, NY) and they are absolutely terrible about clearing tree limbs from power lines there too. Must be standard procedure for them. Drives me nuts. Even if I call, they don't seem to do anything.

We have the first f/u with the surgeon on Tuesday and I'm sure that's going to get moved. He's only in the office Mondays, Tuesdays and Fridays so hopefully we'll be able to get in on Friday.

National Grid has called in recovery teams from as far away as the west coast...so hopefully if you do lose power...it won't be for too long! I'm very nervous because there are some huge trees in the back of my house at home and with all the rain...I'm hoping they don't come down on the house. They are my neighbor's or I would have already had them taken down.

I hope your meeting is not postponed...but it's better to stay safe than risk getting hurt venturing out before the storm has passed.

I'll keep you updated and hope you don't have to evacuate!!!
Chris

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Honestly, with the pain medication, I found it was important to take up to six stool softeners a day. I don't know what stage is, but you brought back my memories of screaming in the toilet. I did that too once I was toward the end of the treatment and after the end of the treatment since the treatment is cumulative in nature.

As far as flying in December, I find that flying gives me some pretty significant side effects. This, apparently is because I was treated in my lymph nodes since three of them were suspicious for cancer. Now I have problems in pressurized cabins. So I would say yes she can probably do it, but she may suffer some side effects and may need a great deal of rest when she gets there and, if she is like me, may need to bring her pain meds. I have a lot of pain when I fly but evidently for people who were treated as I was, this is not an abnormal complaint. I worried a lot about some of the pain meds I was given that I totally needed but when I stopped having extreme pain, I did not feel any need to take the meds. I did not suffer from addiction to them. I hope this is the case with your mom. No one should have to suffer from extreme pain in this day and age. Encourage her to take the meds and stool softeners.

Sounds like you are near the end of the worst of it. Hang in there and congratulations on your upcoming wedding. You deserve to have a wonderful time.

All the best,
Sandy

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for the post, Sandy! I'm beginning to think that stool softeners need to be added...and added soon. I'm thinking about running to the pharmacy today to get some since we might not be able to get out on Monday or Tuesday if this storm is as bad as they say. This way, at least I'll have them here when we talk to the doctor on Monday if they say to start taking them.

Thanks for the info about flying. They did expand the radiation area after the first couple of weeks...so I have a feeling she'll be in a similar situation as you. We will definitely make sure she's well stocked before the trip, assuming she feels like she can make it!

We're getting low on percosets already ... but she didn't take them this morning. We may not be able to restock on those until Wednesday...so we're trying to ration them a bit. We both thought we'd be able to get out tomorrow morning, no problem...but that's not what they seem to be saying on the news now.

I'm definitely hoping there aren't any addiction issues afterwards, but they are absolutely needed right now and a lifesaver, really!

Thanks again :)
Chris

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

Chris,

I'm glad to hear your mom has felt better and having some good days/hours/moments. I know she is relieved and felling more optimistic.

Take care during the storm and I'll be watching for more uplifting updates. God bless you both.

GiGi from TN

eihtak
Posts: 879
Joined: Oct 2011

Hi, glad to see your mom has had some pain relief. I was in horrific pain even before treatment began, and started taking oxycontin at the start. My tumor size and placement made it so I could not even sit or lay on my back. At times I would fall asleep kneeling on the floor beside my bed with my head on a pillow, or just pace the floor massaging my butt cheeks to get relief! I stayed on the pain meds throughout treatment and several months of recovery (dosage slowly increasing). Just as I was feeling better and weaning off them I had a second cancer diagnoses of breast cancer, so remained on the oxycontin for several more months through that treatment. I am now 1.5 yrs post treatment for Anal Cancer, and 6 months since breast surgery (some treatment is long term). At times I felt like a drug addict with the amount of oxy I was taking, but if managed correctly can sure make things more tolerable! In this day and age there is no reason to suffer when there is help available. My advice is to take a mild stool softener though, I took 1-2 Senna daily since the oxy can cause constipation. Also as much water as possible. When I was both physically/mentally ready to be done with the pain med the dose was lowered every 2wks so I could just wean off. I had a couple uncomfortable nights but nothing too awful. I seldom take even a tylenol now unless I've really overdone things. Hope this is going to make her/your recovery a bit smoother. As always, all in my prayers.

chrisfromny's picture
chrisfromny
Posts: 32
Joined: Oct 2012

Thanks for checking in and sharing your story. I couldn't imagine going through the anal cancer and then having to deal with breast cancer. You're so strong!

I'm going to call the doctor first thing tomorrow when they open to talk to the nurse about the stool softener. I'm feeling very confident that they'll want us to start that. We do have some here...but I'll need to get more to make it through the storm if they want her taking more than one or two per day.

She hasn't had a BM since last Thursday night (which coincided with when she started the oxycontin). She's tried multiple times but nothing happens.

When the pain flares up, she does the same kneeling routine with her head down. Looking at her makes me so sad, but I realize that there's not much that can really add to the relief at that point. That's typically after she does a sitz bath or urinates. Luckily, we haven't had any of those episodes today...so I'm really hoping we've turned the corner and are actually seeing some progress.

Thanks so much for your post!
Chris

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