deruo
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Somewhat famous in Canada as the woman appearing in Anti-Smoking commercials. She was a non-smoking restaurant worker who developed LC, from what she and others believe was exposure to smoke in her working environment.
Article at:
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What a great post Uncle Doug.
You brought up one thing that has really struck me during my journey on this path with my Mom: The number of people out there that for whatever reason, don't have (or seem to have) a support system. I've seen those people too, young and old, at the chemo suites all by themselves every time they come.
We used to half-jokingly refer to ourselves as her "pushy kids" but I wonder about those people out there that don't have "pushy" people advocating for them. It haunts me.
I think I've said it before here, but the Nurses I met are convinced that having a support system, and a positive attitude are 90% of the reason for success or progress when dealing with cancer.
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Kel, please accept my condolences and sympathies.
There are no words really, but I'm wishing you all the strength and determination you'll need in the days ahead.
I haven't been around here much since my Mom passed recently, but you've been in my thoughts and will continue to be.
If you need to vent, you know where I am!
Hang in there and be proud of your Mom and of the fact that you're a great Daughter!
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She passed away on March 28, 2005.
She’d been experiencing shortness of breath and a fever for a few days, so I called the cancer center on March 17. Their response was "if it gets worse, take her to emerg." I then called the home care nurse who was kind enough to come by on an extra visit and have a look. She called the same cancer center nurse who then made a visit with the doctor possible.
Upon arrival, they seemed nonplussed until seeing her O2 at 90%. They admitted her saying that it could be pneumonia, radiation pneumonitis, or an infection. She was having real difficulty breathing.
Long story short, they finally started steriod treatments EIGHT days later on Good Friday for pneumonitis. I slept in the hospital bed next to he on Good Friday just in case she needed me as things didn’t look good. I barely slept a wink and helped her several times to go to the washroom as she couldn’t do it herself.
Saturday was a better day. She could breathe better. On Sunday morning I got a call from a doctor new to the hospital saying they were moving her to ICU as her breathing was worse. When I got to the hospital, she seemed better. The nurse told me her EKG showed some heart event type damage but she seemed fine. After talking and sitting with her for a while she went silent. Things went crazy with nurses scrambling and sending us out of the room. . They came out in the hallway to tell us she’d had a stroke, and they gave us a chance to hug her before taking her down to ICU.
We spent hours at her side and though she was sedated/not conscious, could feel hand squeezes when we asked for them. Seeing her on the respirator was agonizing. It was almost as if mom had already gone.
We had to make a decision about DNR if she had a heart attack that night. We said do not resuscitate. The doctors had told us the stroke was bad enough to leave her speechless, and paralyzed on the left side. Would she want to be in palliative care if she was able to be revived, and even then, there was still the cancer to bear in mind.
The next day, we asked about removing her from life support. We would have had to make the decision in the next few days anyway, but mom would not have wanted to be on the machines even now. We finally made the decision at 10:30 p.m and all went in to be with her as she left us. 45 minutes later she was gone. I held my mothers hand as she died, but a huge part of me died as well that night. I’m empty and have been crying all week. It’s just not fair for someone to have fought so hard through chemo and radiation to be brought down by a stroke that could have been prevented. I honestly feel that the hospital and doctors have been negligent. Had they started treatment earlier, perhaps her heart wouldn’t have had so much stress put on it and perhaps the stroke would not have happened.
The week since has been a nightmare. I love my mom so much I would have gladly given my life up for hers to continue. I feel cheated. I’m angry at Cancer, and the procrastination of the doctors who should have known to bring my mom in for pneumonitis testing 6-8 weeks after chest radiation.
These doctors have to learn that cancer does not take weekends on holidays off.
As a result, I sit here on the day that I’ve buried my mother, wondering how I’ll ever be able to move on from this. She was the most important woman in my life, and I’ve never loved anyone as much as I did her. I hope she is in a better place, because I’m in hell right now.
For my friends out there going through radiation, YOU MAKE SURE YOU KEEP ON TOP OF YOUR DOCTORS TO LOOK FOR SIGNS OF PNEUMONITIS, and push them as much as necessary.
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Jorja,
I'm a little late writing to you as I've been at the hospital quite a bit with my mom. It looks like she's got pneumonitis, but it hasn't been confirmed 100% yet.
I can tell you that like you, we've been very concerned with her lack of appetite, which has been for several weeks now. The hospital staff said that they are more concerned with patients drinking than eating. This makes sense I guess since you can go for a long time without food, but only a very short time without fluids before things start shutting down.
Please keep us informed as to your dads progress. It's nice to know that things will get better for mom as this past week has been very scary, though I too, am a bit worried about this fibroid business.
d.
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Short of breath
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hi again,
actually the bronch wasn't done till today. They seem to think that it's radiation pneumonitis and did a CT scan and a number of chest xrays. The bronch was done just to make sure that this is in fact what we're dealing with.
They don't want to start steriods until they are 100% sure, and since cancer takes a holiday on weekends here, it'll probably be Monday or Tuesday before the cultures are finished to confirm pneumonitis.
At least shes got some color back to her from the transfusions. Just getting up to brush her teeth gets her all winded. It's very worrysome,but I read in the other thread about pneumonitis that this is "normal" and will dissipate.
Gee its always something isn't it?
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Thanks for your responses everyone.
A bit of an update..... they seemed to think it was either pneumonia or radiation induced pneumosistis(sp?). They put her on Levaquin to treat that (if thats in fact what is involved) Hemoglobin was way down so they finally gave a transfusion to get that back up. She looked and sounded much better after that. Best blood pressure I've seen in a long time.
They are talking about steriods to get the ol' appetite back again.
In the meantime, tomorrow they are doing a bronchosopy to see if they can further determine why she's having trouble breathing.
This in itself is kind of scary, as I thought they'd pretty much decided that it was pneumonia or a side effect of radiation that was causing the SOB.
So everyone here is on pins and needles. Wish us luck tomorrow!
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Moms back in the hospital having problems breathing and has a fever.
O2 sat was 90 without supplemental O2 so they admitted her. Apparently, they could also hear a slight wheeze in the lung that wasn't affected before.
They mentioned a number of possibilities.
Pneumonia (I'm thinking this would explain the fever)
Other sort of infection possibly side effect of rad (again, would explain fever)
Blood clot (which I think has been ruled out, will find out tomorrow)
One thing I seem to recall hearing the doctor saying was that it was too soon after chemo and radiation for him to strongly suspect the cancer spreading (I'm probably not phrasing that very well)
I guess the really scary thing about all this is that she sounds just like she did before chemo and everything started. We know that her hemoglobin is low but they've yet to suggest or do anything to give it a boost.
I think what I'm looking for right now is some reassurance that what we're dealing with is "just" and infection and not the return/spread of "the beast".
Anyone had an infection after radiation/chemo that affected your breathing and a fever like this??
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Great news Kel!
If you get to a beach, have a drink or two for me!
d.
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First of all I want to thank everyone for all your help/support over the last 8 (already?) months. I can't imagine going through this without you, as it's been very reassuring having people who can answer questions we caregivers have. I've been recommending this site to other Lung Cancer patients and care-givers I've encountered on-line.
So thank you thank you THANK YOU!
Mom finished chemo at the end of December. Finished radiation to the chest and PCI at the end of January. We knew there'd be fatigue and it seems to have set in. Blood tests show that she's low on hemoglobin so we're pushing for a blood transfusion (seems we have to push for anything but will do it cause the squeaky wheel gets greased). Blood pressure has also been low but we're working on getting that back to normal as well.
The main problem seems to be appetite. She can't stand Ensure and Carnation Instant Breaky. My suggestions to get her to hold her nose and drink it anyway have fallen on deaf ears. Any appetite she may have seems to disappear when she smells food. Tonight she was actually physically ill after sitting down to dinner. (I don't take this as a reflection of my cooking skills)
I keep telling her she's got to get some calories/nutrition into her so that her body can start generating the components needed to regain strength but it seems to be very difficult. I'd hate to see things get to the point where its either eat-or-you're-going-on-an-IV.
Does anyone have any suggestions or experienced this type of reaction to food? Tips/tricks to get things down that you really don't feel like eating?
I was joking that maybe we should get the Decadron out, but I don't think the Docs would appreciate that.
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That is great news about NED! Congrats!
The decision to do PCI can be a tough one. I was afraid that we wouldn't even get the opportunity to consider it but I have to say, though I'm not crazy about moms rad onc, he did finally decide to treat her with radiation and presented the options for PCI quite well.
Non-aggressive: basically the wait and see approach. He said that chances of something going to the brain were fairly high. If and or when something comes up, they'd treat it (with radiation)
Aggressive: giving it all you've got. Said that the window for doing it was narrow and that PCI would reduce the chances of a met to the brain substantially, but that of course, there were no guarantees. I seem to recall him saying that once we did PCI, that chances were that radiation to the brain in the future were not likely. Major side effect of PCI is fatique.
She decided to take that small chance for a cure and opted for the aggressive (PCI) route.
Note that my mom had PCI and chest radiation at the same time. PCI was done at the end. That finished just over a month ago. I'm always saying that everyone is different. I haven't found her as absent minded as she was from chemo, but she just started feeling the fatigue a few weeks ago.
The process can be scary, but I found that the staff were great, explaining the steps including the mask making. I found Diannes PCI Diary very helpful as well. Thank you Dianne!
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Hi Mark,
Can't really add anything to whats been said already, but am glad that you decided to de-lurk and share.
Theres a wonderful group of supportive people here. I look forward to hearing more from you.
I'm a caregiver, so I can only imagine how scary the whole thing is for you, however, you are young (same age as me) and limited stage.
My mom had PCI as well as she decided to pull out all the stops in fighting. She's doing very well and amazing all her doctors with how well she's tolerated everything. Everyone is different of course, but it can be done!
Hang in there and visit when you need!
d.
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Wow. I wish I could come up with something as profound or match some of the wonderful words that have been written by others here. Your question has been timely as besides my own moms illness, my best friend, whose mother recently died has asked me the same question - almost verbatim.
I remember someone saying after my dad died that when a child dies, you mourn the loss of a future that will never be, and that when a parent dies, you mourn the loss of the past. Let time help heal the grief you are going through.
I've often wondered whether I'll ever be "normal" again, several times in my life. 8 of my best friends were killed in a plane crash 14 years ago, my own fathers' death 10 years ago and now moms illness. The only thing that has helped has been the passage of time. Even then, I can say that I'm not the same person I used to be. I'd like to think I'm wiser and I certainly don't let "the small stuff" get to me as much as I used to.
I know it doesn't seem possible now, but you will laugh again. You may never be the same person you used to be, but I think what someone repeated upthread "that which doesn't kill us makes us stronger" really is true. It's almost as though the pain becomes a companion along the ride of life. Just not always sitting in the front seat.
It took a trip to a therapist for me to understand that what I was feeling was normal. The therapist said she'd be concerned if I wasn't feeling the way I was.
As far as the antidepressants go, I've been down that road as well. In my case, I found that they left me feeling more apathetic than anything. I think the house could have been on fire and I'd be like "oh well, what can you do?". I finally decided that feeling bad would be better than feeling nothing at all, plus they had some undesireable side effects I no longer wanted to endure. Mind you, this was about 8 years ago and I think they've improved them somewhat.
The choice is yours, but I wouldn't be in too much of a hurry to get off them unless you really want to. It sounds as if staying on them for a while would be beneficial. Have you asked your Dr. about this? He may very well suggest you do stay on them for a while, or perhaps wean you off them.
Enough of my rambling, hang in there, and feel free to PM me if you'd like.
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Doc says CT shows 1 - 1 cm "mass" in mediastinum and lower right lobe. Much smaller than what they were when this journey started.
She said that progress has been wonderful, and that some if not all of what they are seeing is scar tissue so now we wait and do follow ups every 3 months. (Can't tell if theres some cancer cells hiding in there either)
I asked for a copy of the report and I noticed it also said "no evidence of metastatic disease". Anyone know if this the same as "NED"?
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I can't add anything that hasn't been said already, but hang in there!!!
Small Cell is VERY responsive to chemo. You're limited stage so thats even better.
It's not a walk in the park, but remember that everyone is different. My mom has done it all and the Doctors are amazed at how she's done. Very few side effects. Expect some discomfort with swallowing during radiation and foods taking on a different taste during chemo (or no taste at all).
Like everyone else has said, you CAN do this. If you need support, please ask for it!
d.
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Ashstar, my heart goes out to you!
I think I know how you're feeling.
I live in an area where "going to another oncologist" is just not possible. Getting a second opinion could mean at least a 3 week wait.
The only thing I can suggest is that ultimately, it IS your moms decision whether or not to go for chemo, but she should know that SC is VERY responsive to chemo.
The one thing all the nurses mentioned to me is that positive attitude is 80% of the battle.
Hang in there!
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My mom is on cisplatin (actually just finished her last cycle on New Years eve). One of the questions she keeps getting asked is about hearing loss, so you might want to mention this to your dads' doctors. I seem to recall reading that it was one of the potential side effects as well.
Also, you might want to mention about his lightheadedness. It could be that he's a little low in a few vital blood components. My mom passed out one day and after a few blood tests, we found out that she was anemic. Nothing a blood transfusion didn't fix.
Hoping this helps.
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Thanks for the responses!
Kel, the hair is long gone, and she's been using the magic mouthwash for a while now, but thanks for the heads up!
Glad to know that your mom had minimal side effects. I think the list we got of potential side effects is worrying her, but I keep telling her that everyone is different - and that she may find it easier to go through than she thinks.
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Hi Everyone,
Sorry for being away for so long ... and without a hall pass!
Called an ambulance for mom a couple of weeks back as she was short of breath. Long story short, she was in hospital for 5 days with fluid in the lungs and the emerg doc thought it was heart failure. Oncologist thinks it's chemo so though we missed one day of chemo - she'll be admitting mom for the last 2 cycles. In the meantime, lots of tests to make sure the heart and kidneys are working okay.
In the meantime, just prior to this, the radiation oncologist was talking about options for radiation starting at the end of December. I was confused as prior to November, he was not going to do radiation at all. Perhaps it has to do with mom having "extensive" SCLC. (We only just got a clear answer on that last week) So though she's technically extensive, he's impressed with progress so far so he's going to do radiation.
So lots of ups and downs. He said radiation gave a small chance at a cure, but mom wants to take it. So she'll be starting radiation at the end of December. 22 sessions to the chest, and 10 to the brain.
None of us thought to ask, but does anyone know if the brain sessions are usually done after the chest, or are they done at the same time?
Jeez, there were 7 of us at the meeting with the Onc. You'd think one of us would have thought to ask
Chemo again this week. Hope all goes well.
Hugs to anyone out there that needs one!
d.
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Thanks very much everyone for your responses.
This decision has been put on the back burner for the last few days as mom was admitted thru emerg to the hospital with SOB from fluid buildup in the lungs. As a result she missed one session of chemo (which didn't seem to concern the oncologist as much as it does me)
Emergency doc seemed to think it was congestive heart failure, but the oncs seem to think it was from chemo. So they've been doing tests to make sure theres nothing wrong with her heart.
One oncologist said tonight that for some reason, they've been seeing more of this recently in patients taking chemo "that usually doesn't cause side effects like this".
The most frustrating thing about all of this is that you have dozens of questions but can't get the doctor to stay in one place long enough to answer half of them, or if it doesn't come out of the patients mouth, they don't seem to take it seriously.
d.
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Hi all,
Mom got the CT results back and both the chemo oncologist and the radiation oncologist were very pleased with the progress we've had with 3 cycles of chemo. (Currently doing #4). 1 tumor has shrunk from about 7 cm to 3 cm.
Unfortunately, I wasn't able to be there for the consult, but was told by my brother that he was told that mom's staging was extensive. Up to this point we hadn't been told. As far as we knew, the cancer is in 1 lung, the mediastinum (sp?) hilar region and 1 adrenal gland may be affected, (they weren't sure about the adrenal) I thought extensive meant that the cancer was in other parts of the body?
She hasn't had radiation yet because according to the docs, the field would be too large as she's rather petite, and would have been too much for her to handle.
Today he suggested 1 of 2 approaches for radiation (up until now he said he didn't think he'd be doing radiation at all - which muddles things further for me)
1. Gentle Approach - monitor for new growth after chemo finishes and if/when it occurs - blast it with radiation.
2. Aggressive Approach - chest radiation as well as brain radiation. (PCI or WBR I assume) after chemo finishes. I don't like that he told her this offered a small %'age chance of a "cure", but mom seems to be leaning towards this option because "a small chance is better than no chance". On the other hand, the Rad. Onc. himself apparently said that if it were him, he wasn't sure he'd put himself thru the process for such a small chance. (?!)
I feel like I'm back on the roller coaster we were all on back in September when she was diagnosed. Things seemed to be going well, but I'm all panicked now.
What do you guys think? Does this sound like standard treatment for extensive SC? And which option is preferable? Is there a "standard" treatment for SC?
Oncodoc, please feel free to comment!
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Hi Heather,
Though I'm very sorry to hear about your mom, I'm so glad you found us here and hope that you find it as much a place of inspiration as I have. I can relate to the feelings you've described because like alot of caregivers here, I'm going through the same thing.
If theres one "good" thing about SCLC is that (according to the oncologists I've spoken to) is that it usually responds very well to chemo and radiation.
I suspect your mom is on the same chemo mine is. Cisplatin and Etoposide. I believe it is also called VP-16. So far, we've had good results with it, and mom is tolerating it fairly well. Just make sure that your doctors are aware of any side effects, like the swollen feet, and don't let your mom decide to "muddle through" because she doesn't want to be a "bother" to the doctors/nurses.
You might find that having your mom use plastic utensils will help diminish that metallic taste of foods. I've also heard that cinnamon helps with the odd tastes that things take on while on chemo. Everyone is different of course, but give it a try.
There are a lot of caring people here with tons of experience and advice. Don't be afraid to ask!
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I agree! No one here has a monopoly on pity parties!
I think it's wonderful that you've taken the time to join us here, and share information and support with others.
Hey we're here for you too!
d.
Lung Cancer patients fight stigma - Toronto Star
in LUNG CANCER IN THE NEWS
Posted
http://tinyurl.com/je48h
Nice to see many points we're all TOO familiar with in a large paper here in Canada. Hoping it makes a difference for even 1 person out there.