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Anyone with this: Brain stem, strain on voice, swallowing issues...

Tubbs
Posts: 51
Joined: Jul 2009

My wife (oligoastrcytoma) had avastin and CPT-11 treatments) along with temodar for several weeks until they had to be halted due to an infection from an incision from a previous biopsy.

In the last few weeks, her voice has grown really week and I've noticed she gets hiccups and has some trouble swallowing mostly liquids, often leading to coughing attacks and spitting up what she's swallowed. In the last couple of days, she has had some barely noticeable paralysis on the right side of her face/mouth.

We went to the oncologist today to re-boot the Avastin treatments after a couple months off.

Without looking at an MRI, he thinks some small tumor may have massed near her brain stem, or it's residual tumor that was getting beat up by treatments.

The doc doesn't seem overly concerned with this and thinks there might even be an improvement by tomorrow sometime. But it sure sounds scary and concerning to me.

Anyone else had this sort of problem and experience? I feel in my gut that there's something happening here and not in a good way. Any past experience with this would be really helpful. Thanks!

connsteele
Posts: 232
Joined: May 2011

Sorry to hear of your wife's struggles. First off, I say, "listen to what your gut is telling you." You know your wife much better than her doc, well-meaning and competent that he may be. Over the many years of dealing with our son's health issues, I've learned that my gut feelings are usually right. His tumor was in the cerebellum.

Re: swallowing issues. I would be concerned about that. Difficulty swallowing can lead to aspiration pneumonia. This happened to our son, even before we were aware that he was aspirating small amounts of food and/or liquids.

This all began after his last MRI which showed huge tumor progression over two months time. We were told that any treatment might help with quality of life but not extend it. Soon after, he became paralyzed on his right side, and was part of his overall decline. His swallowing problems started about that time too, with coughing spells after drinking liquids. I guess he was aspirating small amounts then. It got worse over one week's time. Thickened liquids and foods like yogurt and jello, and foods put through a food grinder, was all he could handle.

He was also put on this awful stuff called "Thick It". You put it in water, coffee, juices. It was pretty gross and he got so he refused it. At that point, he stopped eating and drinking anything and he passed away a week later.

I don't want to alarm you to say that your wife is at the same stage our son was when his swallowing problems started. But I would start watching her carefully and offer only thickened foods while she is having this problem. And keep on the doctor with your concerns. The squeaky wheel gets the grease!

Best to you and your wife,
Connie
mother of David
dx medulloblastoma, age 8, 1985
26 years remission
dx AA3, April 2011
passed away April 14, 2012, age 35

Tubbs
Posts: 51
Joined: Jul 2009

Connie: Thank you for your reply. I'm very sorry to hear about David. Sounds like both of you have had a hard road, but I appreciate you taking the time to pass on to me what you have learned.

I've been mostly optimistic over the last few years since her original tumor was diagnosed and her recurrence at the new year.

But these last few days, as her voice gets soft and she talks less...and then when she does talk, it's hard to understand her...well, I'm now feeling slightly defeated and definitely concerned. Like this is the corner we are turning which is showing us that the hardest part is on approach.

The old 'her' is gone, her energy has left. I can see fright in her eyes but I think she's afraid to tell me just how scared she is. I just don't know what to expect. Will she live another 10 years or just a matter of months? Or will she live to be 80? (She's 41 now).

I look at her the last few days and can't help but think that this is what the beginning of the end looks like. The signs are starting to show themselves.

Thanks again for taking the time to reply. It let's me know that I'm not overthinking with concern.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

I agree that you are definitely not overthinking. My husband has DIPG and his headaches pretty much went away after he had recovered from his radiation. Now, every time he gets a headache, he is afraid to tell me for fear of me overthinking it. I don't think there is any overthinking when these damned cancers are involved.

Keeping you and your wife in my thoughts,
Leslie

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I don't really know what to tell you except to share our experience. My son David (29 y/o, fighting a recurrence of an anaplastic oligodendroglioma) started having swallowing issues. I was frantic because he takes so much medication...stuff for seizures, heavy duty painkillers (extended release morphine, dilaudid) steroids for brain edema and swelling, etc. and he couldn't swallow any of it. He just stored everything, even water, in his cheek--in the pocket between his gums and his cheek. Always on his left side too....odd. I didn't know how dangerous it was, until he woke in the morning and started chewing. He had meat in his mouth from dinner the night before! I remembered Connie's son who developed aspiration pnuemonia, and I was really worried. Then for some reason, he started swallowing again. I don't know why or what happened to make it possible for him to swallow. I just wanted to tell you about our experience because maybe this will happen with your wife. It's been such a roller coaster of ups and downs for us....we never know what the next day may be like. A lot of the times we are surprised and things get better. I hope that's the case for you too.

About the doctor's comments regarding what may be causing your wife's issues....I'm bothered that he's making what sounds like guesses without an MRI or some sort of definitive test. Can you insist on an MRI? I think you should listen to your gut and make them do some tests and try some treatment options.

I hope that things have improved....I've said it so many times on this site that I feel like I need to apologize for being redundant....it's like the weather in Oregon...there will be sunny bright days and rainy dark gloomy days. But just because today is dark and rainy doesn't mean that tomorrow won't be bright and sunny.

Hang in there!

Love and blessings,
Cindy in Salem, OR

Tubbs
Posts: 51
Joined: Jul 2009

Thanks for your reply and insight, Cindy Sue.

Things are so strange. My wife was prescribed decadron (4mg) last week when she went in for her Avastin treatment and it's made some difference with her paralysis and appetite.

But then there's days like yesterday where she basically wanted to lie in bed all day and it just looked so dire. I ended up rousting her enough to go to the bank with me, but it was hard...I had to help her dress, stand, get in the car, etc.

She told me in the morning, after her 4mg dose of decadron, that she wanted another 4mg. How often do you hear cancer patience ask for more decadron?!?!

Then, today, while she wasn't jumping up and down, she surprised me with her energy. She was able to get up by herself most of the day and we left the house to visit family for a couple of hours.

As for the MRI, I did ask the doctor about it about a month ago and he said not yet. The reason being, no matter what the MRI showed at that time, he would still prescribe Avastin, CPT-11 and temodar.

We were back last week and it's the first time the oncologist started mentioning things like 'quality of life,' 'comfort care' and that sort of language. A real bummer. He said since she's had a good reaction to temodar before, he wants to give it a small bit of time to work before he breaks out 'the big guns' which are whole brain radiation, and radiation centering on her brain stem. But that is a quality of life thing since that treatment could effect her speach and swallowing for the rest of her life.

The radiation oncologist suggested I start writing down things that stand out to me: incontincence, choking, falls, etc. Said the Avastin is tricky because one of its bad traits is that it masks some of the tumors that might show up on an MRI.

Oh...what a crazy world this brain tumor world is :(

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Tubbs.

It sounds like you are experiencing the roller coaster ride too. I have a hard time with being so happy about a good day (or about a few good hours) then having a really bad day and being so grief stricken. The emotional ups and downs are really taking a toll on me. Yesterday was so bad because we had a long hard dr appt and then a two hour wait for our ride. It really exhausted David and last night he couldn't swallow, etc. (I wrote a long post about it on the grief and bereavement board.) But then today he was so much better. When he woke up, I asked him how he felt, and he said, "Fine." Shocked me. But then he hasn't said a single word since, and he's slept almost all day. I think (I'm hoping) that he's still tired from yesterday.

I hate that terminology "quality of life," "comfort care," and yes, I hate the word "hospice." I can feel my claws come out and I get ready for a battle. But I'm getting worn down. We are at a crossroads for David...his NO does not think David should do more chemo, and he doesn't think he will authorize it for David. I think the NO is probably correct...I think that the chemo might kill David faster than the tumors. So "quality of life" is starting to have real implications for us. I don't want the little bit of time that David has left to be filled with pain and suffering and misery. But I think we are a ways from that. Anyway, I didn't mean to go on about my situation....I just wanted to say that I know what you mean about those words being such a bummer and so depressing and hope-destroying. It's hard to have any quality of life when you are so worried about the quality of life. It's sort of self-defeating---am I making sense? It messes up any chance for quality and peace of mind when they talk like that.

I think it's a really good suggestion to keep notes on things like choking, falls, incontinence. I really wish I would have done that sooner. When David had an MRI that showed a brain bleed had taken place about 5 weeks previously, I couldn't remember if that was the same time that he started having incontinence issues, left side deficits, trouble talking, etc. I wanted to know if the brain bleed caused those problems, or if those things started happening right after he had a chemo and Avastin treatment. It would be really helpful to know if those issues started up when he had the brain bleed or when he had chemo---it would help us decide if we should risk trying to still do chemo or not.

Please hang in there and keep us all updated on how your wife is doing. I will be thinking about you both and praying for you too.
Love and blessings,
Cindy in Salem, OR

Tubbs
Posts: 51
Joined: Jul 2009

Thank you Cindy Sue...I was going to ask you, how do you deal with incontinence issues?

Last night, my wife fell off the toilet around 2am and lied on the floor for about an hour in her own feces since I was asleep and didn't realize she was in the bathroom. She has no upper body strength to lift herself up, and her leg strength/balance is negligible. She fell off the toilet again this morning. Do you have a system you use to help your son in such instances? Our home is old and even if I did install handrails, etc. I doubt my wife would have the strength to use them. I thought of getting a bell or something for her to use. Of course, something like Depends is an idea too, but I know she will raise hell about using them (she's 41). Thoughts?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I am so sorry to read about your having to deal with incontinence. I remember when David first started having issues and how devastating it was. It must be so very hard for your wife...I feel so bad for her! It robs her and my son of any shred of dignity. I hate it...

Our incontinence issues started after a brutal chemo treatment that almost killed David. They used a special procedure called the blood brain barrier disrupter---it lowers the blood brain barrier that naturally protects the brain from harm...like chemo. It amplifies the effect of the chemo by approx. 100X. David couldn't handle it, even though he was young and healthy. He had a lot of brain swelling. So while he was in the hospital recovering, they had a therapist come in and work with David. She was a gorgeous little thing, perfect figure, long red hair, a little younger than David...even though David was sick, he was still very aware of her. She was standing next to him with her arm around him to steady him and they were looking at a wall where I had posted a bunch of pictures. She was having David tell her about the pictures to see if his memory was affected. David could remember all the details and he was happy that he was doing good and feeling okay. He was actually laughing with her and enjoying himself. I was so happy...he had been so sick and miserable and it was wonderful to see him laughing and okay. With absolutely no warning, poop just fell out of him. (He was wearing a hospital gown with nothing underneath.) It hit the floor with a splat and it smelled terrible. David was so shocked and appalled and horrified. She told him it was okay and it happens all the time and no problem, but it didn't help. They got him to the bathroom and had him sit on the toilet. He was totally naked and the doctor and therapist and a few nurses and I were all standing and looking at him, waiting to see if he could go more. He looked at me and he had this look on his face....despair and shame and desperation. I knelt on the tile floor in front of him and put my arms around him while he sat on the toilet and we both wept. The doctor and nurses etc all were really quiet and just gave us some time. I think that was the start of us realizing that David was in big trouble.

That was back in November. David recovered and was able to use the toilet. But every time he had a chemo treatment, he had issues. The ability to use the bathroom was compromised more and more. At first it was an accident here and there, then more often, until finally he was having more accidents than success. For the last month or two, maybe more...I totally lose track of time, that's why a notebook is so helpful...David hasn't been able to stand, sit up etc and he's using depends.

We had some similar experiences with falls etc too. I sleep in David's room in a recliner but twice I didn't hear him getting up. He didn't get very far. He just got out of bed and fell. The first time he just sort of sat down hard, but the second time he went down so hard that the house shook. He hit his face on a nightstand and had a bloody nose. Terrified me. I leaped out of the recliner and got my leg caught in the elevated foot rest and fell down myself, trying to get to him. We ordered a hospital bed after that, and the rails have been effective in keeping him in bed. Now he is too weak to even move his legs or his left arm or even raise his head so falling is no longer an issue.

One time right after a chemo treatment, I had to run to the pharmacy and the grocery store. I left my husband dozing on the couch with David's monitor next to him. I thought David would be fine because he was so sedated from the chemo treatment. When I got back, I let my husband know I was home and I looked at the monitor and I could see that David was not in the bed. I threw the groceries on the floor and ran in the bedroom. David was stark naked on the floor, half in and half out of the master bathroom, laying in feces, and he had them on his hands too. He had managed to get ahold of a container of sanitizing wipes not made for people--they are cleaning wipes to use on your toilet, hospital strength. He had used them on himself, trying to clean up, but he made a bigger mess. The horror I felt when I saw him lying there naked and filthy...it was bad. I know how you must have felt when you saw your wife. I gave my husband a look that could kill....but then I felt so furious with myself because I should have never left the house. I was just so sick and filled with misery. David is 29...

Anyway, I don't know if our method of dealing with incontinence will help you much. It's a big advantage being male. And David is immobile. So...I take what we call "the jug"...one of those plastic urinary containers that they give to guys in the hospital, and I have an elaborate way of propping it up with hand towels etc and with a chuck thing (those plastic backed bed liners) and about 90% of the time I get lucky and he pees in that. For the other (bm) ....we leave David with nothing on from the waist down, and he lays on two bed liners. I open up an adult diaper or I rip a depends apart at the side seams and I lay that under him. We call those things "wraparound underwear." My husband did not want us to use words like "diaper" or "depends." We are not fooling David but I think it's more respectful. Just a tiny help but still....anyway, we are always careful to keep David covered etc. When he has a bowel movement, there's not a lot we can do to make it easier. It's just hard and there's no way around it. At first, I was frantic and desperate. I didn't think I could clean him up. I hurt him when I tried to roll him on his side to clean him. And he's heavy and totally unable to help. But I have watched our home health care nurses and I have developed a system and I can do it now. I always tell David, "No big deal, and in ten minutes it will be like this never happened." He doesn't say anything.

Before David was so weak and totally bedridden, he could sit down on the toilet but he couldn't get up. I would help him every time but I could barely get him up. Our home health care team sent a commode but David hated it and didn't want to go to the bathroom out in the bedroom on the commode. So I was trying to get it out of the way, and I wanted to put it in our tiny bathroom. There was no place to put it except over the toilet. And I was shocked to see that it fit perfectly over the toilet and it had legs that raised the seat high and it had sturdy handrails. It made such an incredible huge difference! I wish I had known a whole lot sooner. I would think that one of those would help your wife tremendously. She may be able to get up even though she is weak since she wouldn't have to lift herself up from a lower position. Just like it's easier to get off a higher bed than a bed that's closer to the floor. I really recommend it...I think it could be a big help in your situation.

I bought David a bell like you see at some stores..the button kind. All you have to do is hit the top with any part of your hand. I can hear it anywhere I am in the house because it's loud...and I keep the monitor with me and I can hear it over the monitor. My husband also brought a souvenir type bell for David so he has two now. The downside is that he does random purposeless repetitive things---it's called perseveration and it's common with brain injury...and so David will ring the bell needlessly and endlessly. I just go in and check on him. Our house isn't that big and I don't mind. You could buy a couple of bells and put one in your bathroom for her to ring when she's done and if she needs help, and one next to her bed, maybe one on the floor near her bed or near the toilet in case she falls and can't call you. I don't know how impaired your wife is...that would make a difference. On David's bad days, he can't even process the thought to ring the bell. Other days he rings the bell but can't speak and tell me why. Or he can speak but he can't remember why he rang the bell. What a horrible, terrible cursed disease brain cancer is.

I hope I gave you some ideas that are helpful. I do write a lot, don't I? I'm bad! I'm sitting in David's room and he's dozing, so it keeps me busy and I'm here if he needs me...

Love and blessings,
Cindy in Salem, OR

Tubbs
Posts: 51
Joined: Jul 2009

Thank you so very much for your definitive and helpful answer! It's 'funny' how you say "no big deal" as that seems to be my immediate response to anything she does that might embarrass her and where I need to help her (getting in/out of the car, putting on the seat belt, walking with her to the bathroom after she's woken me up at 3am, etc.).

I will definitely file the commode solution away in the back of my head. I'm happy to report that my wife has had an incontinence issue - that I know of - for a couple of days and has gotten herself off the toilet a majority of the time since the weekend.

I never thought that maybe the chemo treatments are affecting her strength that much. I had immediately attributed it to a tumor near her brain stem. She goes back in tomorrow for Avastin and CPT-11, so I'm really going to be looking for any difference in her strength.

She got out of bed by herself for her first time in over a week today, even if she remains fatigued and lacking in energy, and it's hard for her to speak at times. Do you find that some of David's symptoms come and go in waves? It's never perfect, but my wife will have hours where I'm scared that she won't last a month, and other times I think she just might pull out of this hell. It's ups and downs, though, mostly downs.

It's so frustrating not having an MRI scheduled for another two weeks to see what's going on. Hopefully by then, the Avastin will work it's magic and we won't see much. On the other hand, I've been warned by the radiation oncologist that the Avastin will mask some of the tumor and as time goes on, the MRIs will get harder too decipher.

Again, thank you so much for your very helpful advice. It is very much appreciated and I will refer to it. I hope you and David are getting some good rest and are able to find some positives this week and in the weeks to come!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

You so hit the nail on the head when you described the symptoms as coming in "waves." That's exactly how it is with David. He can wake up in the morning with his mouth hanging open and his eyes glazed and unfocused, and doesn't even acknowledge that I am talking to him, and I am so upset and frightened and feeling like he is going downhill so fast. I'll make breakfast and then bring it in his room and he's looking at the tray and when I ask him if he's hungry, he nods. I have noticed that when he first wakes up, or when he's tired, or when he is in pain, he seems a lot worse, like his symptoms are amplified.

I don't know for sure if the chemo caused some of David's symptoms, but I'm pretty sure it did. He would walk into the hospital for an infusion, and when it was done, he would have to go out in a wheel chair and he could barely get in the car, and he wouldn't be able to walk or talk. He had a really hard time when he did chemo and avastin together, an hour apart. I so wish that he could tolerate the chemo more, because his last MRI showed an improvement. Well, it might have looked a lot better, but he sure acted a lot worse. Chemo really took a lot out of him.

I hope your wife is like how David has been in the past....he would seem really sick, but then rally and do a lot better. There have been a few times when I thought David might not make it, but each time, he has rallied and he's still fighting on.

Thank you very much for your kind note to me. I hope you and your wife are having a great week together.

Love and blessings,
Cindy in Salem, OR

Tubbs
Posts: 51
Joined: Jul 2009

I know the eye glazed over look in the morning. It's scary and you sort of wait for it to pass. It usually only lasts about 30 seconds, but it feels like an hour.

My wife had her first real incontinence issue last night after several days of doing okay. Her avastin treatment was Weds., so I'm hoping it's just the drugs making her body slow to move and incontinent. Like your son, I really had to direct my wife to the car after her treatment. She hates having to use wheelchairs, so I let her walk next to me as I hold her up. I was so mad when the valet walked so slowly to get our car. It's hot out but not that hot out. Scram!

Had to dry the bed out today and wash the sheets (again). I don't mind doing it but I hate having to explain to her why she can't take a nap on the bed in the middle of the day. "Let's just give the mattress another couple of hours." Awful.

At least today my wife told me that she feels her appetite coming back. I always dwell on these beems of light that look so small but are just huge in my eyes.

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