MarGre
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Posts posted by MarGre
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Patti - I had my first infusion of Navelbine 2 weeks ago, had my second This Tuesday. It's supposed to be weekly but I developed complications due to severe constipation and was in the hospital overnight last week. Constipation is a side effect of Navelbine, so watch yourself very carefully. My first infusion I also had moderate jaw pain for a day or two and a couple of days of my tongue fuzzy and sensitive. "Magic mouth wash" took care of the tongue and jaw pain wasn't that bad.
This time I think I'll do a lot better. The jaw pain is much less and the tongue not a problem this time with the mouth wash. Am taking both Milk of Magnesia and stool softener tabs (one thing about having cancer - you get into topics you wouldn't normally even discuss with your own mother!). Navelbine is supposed to be easier in general. Just stay on top of any side effects! Here's hoping it works for both of us!
Marcia
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I suspected for weeks it wouldn't be good as have had pain - turns out caused by several new spots on liver. Also showed a lymph node lit up near left lung and a spot in lower left pelvis area. Getting this news was hard because up to now the cancer has stayed in the upper right lung region - for 3 years at least. So it crossed that "line in the sand" I had drawn mentally where as long as it stayed put I could live with it. Now it's wandering around in my body making it's presence known. Though I know that really it has been there for a while - just took a while to become visible in the scans. There was good news - the two spots in the right lung are smaller and there are new new areas in the lung, and the left lung is still clear. So on to Navalbine. Another day, another drug to try.
My oncologist had to start a new folder for me - I took that as a good sign. I'll be around to generate at least another 10 inches of folder, I hope!
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Good news - congrats to both of you on both the grandbaby and Tom's survival. Hopefully the SOB will improve at least some for him.
Marcia
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Let's hope for good news on your scan! I hope venting helped. In a way, it was therapeutic for me to read your post. When I read other people venting I don't feel like I'm so alone in my crankiness (which is usually around scan time).
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Is your mom by any chance on Alimta? I am currently on it (4th round) and for the last several weeks have had problems with the achiness you describe, just in my calves. It's not really bad but annoying.
Marcia
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I've done the same thing you have and ended up with two large plastic bins for my son and daughter each; that's after really weeding it down! Since dx 2+ years ago I've been fortunate enough to take some major trips with my family. Two trips to Europe and one with my 13 year old daughter to her birthplace of South Korea. I take tons of photos, and after each trip I assembled a scrapbook including money, tokens, tickets, photos, etc. I typed up stories and descriptions of our travels. These will help the kids when I'm gone to focus on the better times and to know that despite having cancer we squeezed a lot of fun out of those years.
The other thing I've done is create a "List of Things". It contains photos and histories of items throughout the house. I have a lot of family heirlooms and items I have made including quilts and baskets. I describe the history and significance of each item. Hopefully this way the kids will have more appreciation for these things when they someday belong to them. I'd have to come back from the grave to set things right if my applique quilt ended up in a garage sale!
I agree w/Ned - I prefer having warning to do things like this and prepare my kids.
We have a good friend whose husband took off on his motorcycle two years ago. His ashes came back in a box to his family a week later, killed suddenly on the road. He left unfinished business, his affairs weren't in order, and it took his wife a long time just get get the paperwork and legal stuff straightened out. His kids didn't see him set out so they never said goodbye. I'd rather not go, but prefer this way to no warning.
Marcia
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Here's hoping it turns out to be nothing and that you're able to find out quickly and not have this hanging over your head too long.
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I am sorry for your loss. It is good you were able to be there with him towards the end. He surely understood how much you loved him and at the end that is all one can do, is express one's love.
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Hi Gabby - first, what a wonderful picture of you and your dad! Welcome to the site, and I hope you use it whenever you feel you need it for hope and information.
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I still have the area in my pleura and the one in center lobe lighting up but no new spots. The odd thing was, the two areas lit up brighter and had higher SUV's than last time - but so did my thyroid which is always the same number. I just returned from some high altitudes in Colorado and he thinks that may have affected the SUV's. (I live in Florida - altitude 0) Anybody ever hear of that?
I know Carole on vacation was able to do without her oxygen going from higher to lower altitude - I could have used some of that oxygen when I was at 11,000 feet! Could really feel it in my bad lung!
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Patti - first, it sounds like your doctor is still positive, always a good sign. I'm sorry you've had any progression because none of us want the cancer taking up any more unauthorized space in our body that it already has. I was on Tarceva last year and it worked keeping me stable 10 months. Not many problems except the worst rash my oncologist had ever seen - ended up going to 100 mg from 150 and on antiobiotics. It cleared up, but then my toes developed giant blisters which enveloped the entire toes. Luckily I live in Florida where I can wear sandals anytime. Again, my onc had never seen anything like it, so I don't think it's a common side effect. They too cleared up and for the last 6 months had relatively little problem with the Tarceva.
Good luck with the Tarceva - I hope you have a great response w/minimal effects!
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My husband drove me this time as I was getting PET results so it was easier - but I still had a little melt down even though the results were good as all that accumulated stress just burst, plus I started thinking about all the people who aren't doing as well and how I've just postponed bad news - not avoided it. Not cheery thoughts but it's hard to be constantly "up" even when things are going relatively well (just waiting for the proverbial hammer to fall!
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It is wonderful you were able to feel well and enjoy your vacation. I just returned from a trip and am convinced of the therapeutic power of travel and vacations.
Marcia
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Patti - I will definitely be thinking of you tomorrow and thinking positive thoughts your way. Coincidentally, I had my PET today and am getting results tomorrow (am also on Alimta) and can totally relate to what you said. Every time I have a scan I seem to have more pain the few days before I get the results. Each time it turns out o.k. But like you I am playing the odds as I'm hitting 2 3/4 years and know one of these times it won't be so good. BUT I keep telling myself it's not going to be THIS time!!! So tell yourself the same!
Marcia
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I had problems with recurring fluid in my right lung so they did a pleurodesis. This is a procedure where they insert a tube into your chest - let the fluid drain over several days (you are in the hospital during this time). Then they inject talc into the space where the fluid was, and literally have you roll around to get the talc spread evenly. It seals the space, and is usually effective. I have not had problems with fluid since and that was 1 1/2 years ago. It is a very uncomfortable procedure, and I was in the hospital 7 days (it took 4 days just to drain it). Also - there is evidence now that the talc actually has anti-cancer properties so that's a little bonus to the procedure.
I hope your mom can get some permanent relief as fluid buildup can be quite painful, not to mention the shortness of breath.
Marcia
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Hi Kelly -
I experience the same sleeplessness for a couple of nights after chemo - my doctor told me it's primarily the steroids. Even a sleeping pill doesn't help - so I guess I'll just stock up on books and movies. Good to hear your first treatment went smoothly and I hope you continue to have few side effects -
Marcia
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Marianne,
I noticed in your second post you mention you see few people outside your family. I too found my social circle and activities greatly shrunk, and I started to get "cabin fever".
It was depressing to sit in the house all day so I make myself get out at least several times a week. I volunteer at the local library (shelving) and even though I can only do about 15 minutes without needing a break, it really helps my perspective.
I agree with those who recommend the anti-depressents. I've taken them and had no problems so hopefully they work for you. (effexor) It is very hard not to get down when one thinks about what we are dealing with but I look at it this way; as long as I feel decent I want to enjoy life and depression takes that enjoyment away from you.
Don't apologize for a depressing post. Call it a "reality post". A lot of us feel we have to be upbeat and strong all the time - that takes a toll. We need to express those negative feelings sometimes.
Hoping you find peace and relief soon,
Marcia
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It's amazing the games your mind can play at scan time! I always get "mystery pains" the week before my scan and am convinced the cancer is spreading like wildfire; so far my scans have all been on the whole good.
I hope the doctor can help you with your back pain - it sounds promising. I'd join you in a glass of wine but it's only 10 a.m and don't think it would go well with the Raisin Bran I just ate.
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Stable is a wonderful word - great news!
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Hi Sarah,
No, you are not alone. I too am hoping for a good turnout! You raise some wonderful points and questions. If I had a choice between going suddenly (time to be determined) and knowing, I would prefer to know. It gives me a feeling of some control over how I exit this life.
Keep on posting those thoughts and questions! I'm tend to only post when I have a specific medical question/comment but enjoy posts like yours that raise the bigger questions - especially when done with humor!
Marcia
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I saw a pulmonologist today and discovered the cause of my mystery problem. I'd been having problems w/breathing out and what I call "involuntary exhalation". The doc said my right diaphragm is paralyzed - could be from the cancer or damage to the phrenic nerve from pleurodesis etc. He is going to do testing to confirm and also check how much oxygen I'm actually getting. Has anyone ever had a paralyzed diaphragm? If so did it get better?
Have to say in a way it was a relief because I don't like the unknown - now I know what the problem is and it's not in my head.
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Here's mine:
dx Stage IV poorly differentiated NSCLC (non-squamous) in right lung, possible rib, pleural effusion.
1st line: carbo/taxol/avastin 6 rounds - complete response, NED for 2 scans
a new spot pops up - zap it with radiation - success.
Next PET shows increased activity in right lung so on to Tarceva - works for 9 months to keep me stable.
Back to carbo/taxol/avastin AGAIN (it had been 2 years). Works to shrink and stabilize the two spots in the right lung. When the next PET shows SUV numbers up it's on to:
alimta, which I am currently on. Oh, and I am taken off the avastin permanently when I develop a pulmonary embolism so now get to do daily injections of blood thinner oh joy.
That's it in a nutshell, from Jacksonville, Florida.
Marcia
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Thanks for the comments - and Carole I did have a pulmonologist but did not see him regularly - just once or twice. Probably because till this point I have had no problems unless related to chemo. But I do need to see one now because these problems are at the least very, very annoying.
Sorry to hear you're stuck in bed, Carole. I spent so much time in my bedroom during my first chemo that I got sick of the decor and ended up completely redecorating.
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Ok, here's a weird one. I was on carbo/taxol/avastin for about 4 months and just started Alimta. I have been having some problems on and off since about the time I restarted the carbo/taxol. First, I have an irritating tickle in my throat that eventually ends up as a cough.
There is also what feels like a spot in my throat that is sore. Again, it comes and goes. I've noticed that in the 2-3 days immediately following chemo it doesn't bother me. And it seems to subside for days and then come back. The doctor has done scans and even went to an ENT - doesn't seem to be any reason. Could it be a damaged nerve?
Also, has anybody else had a problem of what I'll call "involuntary exhalation". It usually happens when I start talking, it's like my lung or chest compresses and I'm having trouble talking because the air is leaving, not coming in.
Does this sound like a case for a pulmonologist? My oncologist is stumped.
My latest PET showed just two areas that lit up, one in the lower pleura, one in the center of the lung. That one is somewhat questionable as may be radiation damage from radiation I had to that spot 2 years ago.
Just thought I'd throw these out to keep everyone from getting bored!
Marcia
Marcia Greer
in GRIEF
Posted
Marcia Greer passed away last night after over 3 years battling lung cancer. She is survived by her loving husband of over 26 years, he son age 19 and her daughter age 13. She will be forever missed. She fought the illness with courage and grace and always lived her life to its fullest.