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Mom is done PCI


Beachmama

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Thank God this day has come. It has been a long month. Mom gets her last dose tomorrow and she is so ready to run that mask over. (I will get pics/video)

She is suffering right now. Her head is burnt and her ears are practically twice the size. She complains of severe nausea and ear popping and wax build-up. We didn't know that the ears would be so affected by this. It has been a looooong week for her. She really pushed through and she is so proud of herself.

This process is so hard on the family who have to watch this stuff happening to their loved ones. There is little I could do for her to make it better. I bought her some nice lidocain aloe gel stuff for her head, which she loved. And I rubbed it on for her, which she loved. And I bought her some roses for tomorrow that she also love.

I wouldn't wish this kind of thing on my worst enemy. I am so glad it's over. I hope we never have to go through this again.

They are supposed to take her port out next. The process is almost complete. 7mos of fighting cancer, now onto the rest of our days where we will constantly worry.

Thanks for listening everyone. Take care.

Connie

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Congrats! This is a MAJOR milestone! As hard as it is, you know you did everything you possibly could and there is so much peace in that. Slowly but surely, mom will start to feel better, and I cannot wish that enough to come soon.

Blessings to you and your family. Congrats!

Jen

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Hi Again. Mom still feels yucky. Her ears and scalp are giving her the biggest problem. Does anyone know when this will stop? Her ears are "plugged" and her hearing is affected. And her scalp is so itchy and irritated still.

Do you think her hair will ever grow back? Does anyone have any experience with this?

(we are going to call the doc tomorrow to get some answers from her, but I really feel like they just abandoned her. She said "see you in a month". I am very disappointed with that. Is this just the kind of thing that NOTHING can be done for? Like just time will heal it, and nothing more?? )

Thanks for any suggestions.

Connie

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Hi Connie--

I was diagnosed with sclc/limited back in June of 2007. I had the usual chemo/radiation over the summer. I finished my PCI treatments the first of February/2008. I still have the ear discomfort, but only in 1 ear. A friend from another list was told to put her ear under the shower and let the warm water wash in and around it every day (do it to both ears), then tip to let the water run out, and that would help keep the wax supple. After 2-1/2 months, I'm starting to feel little tiny stubbles on my head. Your Mom's hair will probably grow back, but I hear it can take a while. I know, I get impatient too. I've had trouble with dizziness, concentration, and finding words, but it's gradually getting better. PCI offers great hope for a cure, so all the side effects are going to be worth it in the end. Stay hopeful and know it'll get better, it's just slow. :D

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Thanks Lori, I am glad to hear you're doing well. PCI was for my mom the worst part of the treatment. I know the facts and stats are there, and it's really hard on the body, but the results are undeniable. I just wish there was more we could offer for the side effects. We are going to call the doc today to ask her for some suggestions. Thanks for the hot compress suggestion, that seems like a no-brainer, but I didn't even think of it!! Her ears are so bad it's crazy. They are bright red/purple with scabs and blotches inside. It's so irritated. And she says everything is muffled and that they pop sometimes, offering momentary relief. But then clogs back up. Is this all normal? Could there be an infection? I hope her radiation doc can help her, otherwise we have to go find another doctor, which isn't ideal right now.

Thanks again for any suggestions.

COnnie

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Boy,I agree! The chemo and radiation were hard, but the PCI effects have been longer lasting and scarier. And the ear effects were a total surprise to me too. There's nothing in the list of side effects regarding ears. I've been able to handle it by myself, but might I suggest contacting the radiation oncology nurse for some suggestions and remedies. Mine are clearing up and going back to normal. I'm sure your Mom's will too. Good luck with everything!

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Connie, I don't know anything about the effect INSIDE the ears, but if the skin is burned try Biafine cream. It is a prescription and it is wonderful. (I had to beg and plead to get it because my Mom's doctors had never heard of it.) You can also get Radiadress gel pads and cut them to fit the shape you need (i.e. the ear) They are not prescription but they are expensive. I found them at ONE tiny pharmacy in my town, but others could order them for me.

Congratulations to your Mom (and you)! It is a huge milestone!!

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Thanks alot ladies. I got ahold if the radiologist doc and she referred us to an ear nose and throat doctor. Apparently they are the ones we need. She mentioned that they may be able to drain the ears, or do a through cleaning to get the wax out. So we are going on Monday. I just hate to see her suffer and this has to be better than doing nothing. I will keep you all posted.

I will look for the radiadress and biofine, thanks for the tip.

Connie

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Well she went to the ENT and it was good. He cleaned out the wax from her ears with a tube and a machine, and told her to pop her ears "every 20 minutes". Because they are closed. She says her hearing is a little better and one ear feels a little better.

She is scheduled for a hearing test on Monday. What a mess! Brain radiation is no joke. We are all just glad she is feeling better and glad she can hear at all.

Hope this helps someone.

Have a good week everyone.

Connie

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  • 5 months later...

Hi everyone, my mum is not at the PCI stage yet but I know she is worried about it, I have read a few stories on here where people opted not to have it in case they got a tumor later on. this thread seems to be on the side of it being better to have it?? If radiation on the brain is only a one shot deal and tumor appears sometime after PCI then what would they do as chemo isn't effective on the brain? Its all very confusing and scary. any info appreciated. thx Shona

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