Hi everyone. My mom is back in the hospital. this is just kicking the heck out of her. what is unusual is my cousin who went through something similar last year, and is clean! told me his doctors said that to do chemo and radiation at the same time is too hard on the person, so they did his chemo first and then radiation, are they doing too much at once? her mouth is raw and infected (thrush) and she is low on potassium and white cell count. when i saw her after work, they had about five bags of stuff hooked up and she cant swallow or anything, she is so miserable. this is really starting to scare me. any words of advice at this point? thanks jamie

Jamie,

I know how tough this must be on both you and your mother. Studies have shown that chemo during radiation helps the radiation. I spent some time in and out of the hospital during the chemo phases, too, but only because I thought it was better to do what was most effective.

I hope the doctors are able to ease the pain and deal with the complications and side effects. I pumped in 2-3 bags of fluids at home for many months. Try to not worry and keep asking the doctors questions until you have peace of mind. They will assume you have no questions if you don't ask. The can explain everything they are doing to the point you regain confidence that they are trying their hardest to kill the cancer beast.

Hang in there, it will be tough for a while.

Ed

Jamie-

Hang in there...for my husband it started getting bad around the 3rd week. Everything the others here have told you about chemo/radiation at the same time is what we were told...and my husband is now cancer free...so, though it was "hell" we are both glad it was done that way. This is especially true for my husband because he did not have a neck dissention, because they found the cancer after his surgery. The chemo was not only to help the radiation work better but to catch anything that had spread into the lymph nodes.
My husband had the worst reaction to treatment that the cancer care center had ever seen. We are not sure why... and as everyone tells you here ...everyone reacts differently. My husband found the Aquaphor and Biafine to be helpful and yes, make sure it is all washed off and that your mom's neck is clean before radiation...it will make the reaction worse. Unfortunately my husband developed 2nd and 3rd degree burns from his upper cheeks to his upper chest area. The physical therapists that treated him when he was hospitalized (the week all radiation & chemo ended) were GREAT! They put Silver Sulfadiazine Cream USP 1% (referred to as silvadene cream) on his skin...this is a prescription medication that they put on burn victims. It was amazing...my husband said it feels cool going on and though we changed it several times a day...removing it with gauze soaked in saline solution...he developed NO scars and his skin is beautiful! It healed in 2 weeks...we were utterly amazed at the quickness of the healing. I hope your mom doesn't have to deal with any of this, but just in case...ask about that cream.

As far as the ulcers in the mouth...my husband's were horrible. He had to eat via his PEG tube, even for water, for 6 months. The baking soda and water solution worked great to clear out the "gunk" and help with the irritation...salt made things worse and really made the "dry mouth" issue unbearable. He also used carbonated water to get the really thick "gunk" out of his throat...for some reason it didn't hurt.

I hope this helps a little. I am also in Southern California, so if you want to send me a private email I will give you my phone #. I don't mind receiving calls any time of the day or night!

Sending lots of prayers and love...

Lorie

Happy 4th of July to everyone!! my mom was released from the hospital yesterday, she wanted to go. looks like the white cell count is back up to normal, still a lot of pain in the mouth but she has several things to put on it. They finally gave her a pain patch! but she doesnt like it. She said yesterday she really wants a cheese enchilada, but cant swallow. things are looking better, now we have to see what comes next in the treatment, whether or not they will do the chemo again in two weeks or not. ps lorie, i emailed you.

Does anyone know where there is a local support group here in San Diego? My mom would really like to get involved with one and so far we have not be able to locate anything. thanks jw

I told her what you said Ed, i would get the enchilada but she is afraid it will burn. plus she says everything tastes metallic. i told her what i had read about sprinkling lime juice on things, but again that sounds like it would burn.
several issues going on here, the radiation machine at the hospital consistanly breaks down and she either has to come back or skip it. i think they need a back up model!
when she was in the hospital they found the pic tube was clogged so they took it out and the rn at the hospital put in a iv in the other arm which now has a huge blood clot in it. she has had shots for that but it is swollen. and lastly, now they say she is anemic and they want her to go in tomm and have a blood transfusion. this is just unreal, is she a case or does this stuff actually happen to other people?
they put off the chemo until next monday and that may be the last one, they say the tumor has shrunk down to almost nothing which is great news!! she is really weak and miserable but alot better than last week. her hair started falling out so she had it shaved. but she still puts on her make up everyday. i can not wait until this treatment phase is over and she can start healing. thanks jamie

Jamie,

Although a lot of what you are describing happens often, it seems like your mother is getting more than the regular dose of problems. I would have suspected the medical team staying closer to the rbc and giving her Procrit before she got so anemic she needed a blood transfusion. Also, from past experience with my mother, I believe I would have requested a mediport before a pic line because of the flushing and maintenance.

There's no doubt the treatment is horrible, we can all attest to that. Do everything you can to keep your mom as pain free as possible. It will really help the outlook for her. Also, she has to keep hydrated or the side effects will be tougher.

Ed

I want to update, mom is finished with her second chemo treatment as of tomm. she did really well this time, the nurse gave her some samples of some antinausea meds (200.00 ea pill) and they seemed to work. the doctor is not on vacation this time and monitoring her much better. three more weeks of radiation and that should be it, yeah! she is tired and weak but much better.
ok, Ed I have a question, I was reading the posts from SLL and I never really thought about it before, I thought the forgetfullness, and different personality was due to the drugs but I never really thought and I dont think they told us that the chemo or raditation would make permanent differences in the brain. is this something that gets better over time or is it that damaging? does it really make you change? I have noticed she looks older but I thought it was just from being tired. learn more everyday. thanks jamie

Jamie,

I am glad mom is doing better! I know how tough this must be for you. I want to reiterate how fortunate she is to have you through all of this.

I can't really answer your questions about temporary or permanent issues from chemo and radiation. I do know that my short term memory is struggling and I start my day by remembering one street that keeps slipping my mind. I ask my wife regularly what the name of the street is and she thinks I am messing with her but I just can't remember. I have a little struggle with reasoning, too. I worry that it isn't getting any better but the doctors keep telling me they don't think it is from the chemo or radiation.

I think the intensity and toxicity of the treatments will make anyone look older. My hair even turned gray, at least what was left of it. I feel like I have aged 10 years in the past year.

Be sure and tell your mother how beautiful she is when she even brushes her hair. It will mean a lot to her.

Ed

Jamie,
I am so glad your mother is feeling better. I hope the next weeks will pass quickly for her - and you.
I did not have chemo with my radiation, but unfortunately things got worse week by week until the end and 2-3 weeks after the end of radiation. Your mother has been through so many problems, I hope the tiredness & weakness will be the worst side effects from now on (I hope this came out right). I don't know about the effects on memory - there was something about an article on chemo and memory loss on this forum recently, but I think it is more likely that the problem is with the stress from the other side effects + cancer itself. I have always had a problem with forgetfulness, I don't think it is any worse than at other stressful times in my life.

Ed, you are right about telling her she is beautiful and encouraging her to try to look her best when she feels up to it. My sisters did the sweetest thing for me when I was really down. I had told them about the Frankestein scar on my neck and how it made me feel. They sent me (from Finland) a package with ten softest and most beautiful silk scarves in all different colors - at the time when I was sick and tired and miserable, the beauty and the FEEL of those scarves was just what I needed. I still go and play with them when I feel sad. And I have a scarf to match every blouse I wear, and then some.

Leena