Ellen in PA
-
Posts
242 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by Ellen in PA
-
-
I just wanted to say that refusing chemo for Stage 4 LC is a perfectly reasonable choice, at least from my point of view. I have refused chemo from Day 1 and am still here, 10 months today since dx, and I still feel fine and haven't had a sick day in all this time -- something I certainly couldn't have said if I'd opted for chemo. We are all mortal and we all want to choose how we spend the time we have. So, if your husband decides to resume chemo, all the power to him, but, if he chooses not to, he's not 'giving up' -- he's just opting for a different way to spend this part of his life.
My warmest thoughts are with you both.
Ellen in PA
-
-
Everyone is different but what has worked for me for bone met pain is ibuprofen, 800 mg 3 or 4 times a day (along with 10 mg of famotidine to protect the stomach). Oxycontin, oxycodone, etc didn't do squat for me, btw. Good luck.
Ellen in PA
-
As another bone-met person, I also heartily endorse radiation if possible. In the meantime, I just wanted to say that the usual pain-killers I was prescribed for the bone pain -- oxycodone, Oxycontin, etc -- did absolutely nothing for me but ibuprofen was great. I took 800 mg 3 or 4 times/day, along with an antacid (e.g. famotidine) to protect my stomach, and it helped enormously (tho not as much as the subsequent radiation tx). Good luck.
Ellen in PA
-
Hi Jussi.
Don't feel embarrassed about the shootings. If they were NOT rare in Finland, they'd never be on the world news. If they publicized every shooting in the US, there'd be no time to hear about Iraq, the stock market, or even the weather...
Hang in there.
Ellen
-
Hi Johnny.
I can offer only personal anecdotal 'evidence' that at least the claim about sugar is a crock.
In June 2004 I started the Atkins diet. For the first 4 weeks I had 0 grams of carbohydrates a day, for the next 48 weeks 15g or fewer. In that year I lost 50 lbs (and felt fantastic). From then (June 2005) till December 2007 I had 25g of carbs/day or fewer and maintained my new weight. Alas, in December 2007 I was dx with Stage 4 adenocarcinoma! So severely limiting sugar certainly didn't prevent my cancer from developing or spreading!
Parenthetically, after dx I said what the he** and indulged in pasta and bread and potatoes and cookies and all the things I'd missed -- and quickly gained 12 lbs! I'm now back on 25-30g of carbs/day and have lost 5 of those 12 lbs. So I am not advocating sugar (or starch -- which turns to sugar as soon as it hits your enzymes) but it surely doesn't have any direct relationship to cancer.
Ellen
-
Thanks, Connie and Patti! But Connie, you've really cheered me up (NOT) -- you mean, I can have Stage 4 LC AND live to get Alzheimer's and go blind?!? Ah, the wonders of modern medicine...
;) Ellen
-
Some of my favorite things -- about having Stage 4 adenocarcinoma:
1. I don't intend to ever see a dentist again.
2. My chances of getting Alzheimer's (always my biggest fear) have dropped to zero.
3. My chances of going blind from macular degeneration (like my father and his 3 brothers) (my 2nd biggest fear) have dropped to zero.
4. The likelihood of my spending my final years in a diaper in a nursing home have dropped to zero.
5. The chances of my never seeing another Republican elected President are high.
:) Seriously, my heart goes out to the younger people in my medical situation who have young children -- but I'm 64, have done everything I ever wanted to do, and figure I'm going to avoid the only things that frighten me. Of course, I'd be delighted if I woke up and this was all a dream -- but it could sure be worse.
Ellen in PA
-
Hi Sarah.
What a bummer! Looking for a better situation is no doubt a good idea but, on your way out, have you thought filing a complaint with whomever one files such complaints with with respect to violations of the ADA? Blaming you for errors made in your absence seems like a can't-lose one, for sure! And the rest is really obnoxious. If, for whatever reason, she feels you're not up to your usual efficiency, I would think the ADA would require her to work with you and reorganize things. Good luck, whatever you choose to do!
Ellen in PA
-
I had come home after 2.5 weeks in the hospital following a massive heart attack and was in bed sleeping when my husband called from work and said a plane crashed into the WTC and the building fell down. My first reaction was that this was one of hubby's tasteless jokes (he has a weird sense of 'humor') but he told me to turn on the TV, which I did, just in time to see the second tower fall.
Btw, I still believe that the plane that crashed in PA was shot down -- but probably that's only a pathetic hope that the US govt did SOMETHING right that day.
Ellen in PA
-
Hi bug and welcome. I'm so sorry to read of the tragedies you've faced in the past year but it's reassuring to see that it hasn't hurt your wit or toughness. You go, girl!
One comment: Before you beat yourself up, please know that adenocarcinoma is NOT the kind of lung cancer that is particularly associated with smoking -- that is squamous cell carcinoma. Nor is it the kind that is particularly associated with asbestos -- that is mesothelioma. The kind you (and I and the majority of lc patients) have is an equal opportunity horror -- young, old, men, women, smokers, never-smokers, you name it.
Hang in there.
-
Hi SharRob.
One problem with getting the kind of data you're asking for is that so few people refuse chemo from the outset, unless of course they're already too weak/sick to withstand it, so I think we just don't know how long an average person in decent shape would survive with Stage 4 lung cancer without treatment. When I was dx, in Dec 2007, I asked what the average survival time was with full tx (chemo/rad) and no treatment. I was told it was 8 months with full tx and a few weeks less with no tx. And so I've opted for no tx. Last week I passed the 8-month mark and I'm still virtually asymptomatic. I do take two shots/day of Lovenox for clots -- I was producing them before dx and that's how I came to be diagnosed (after fainting twice in the street) -- and I've had 14 sessions of radiation to some bone mets that were threatening serious damage to my spinal cord -- but nothing else. I still have no cough or other respiratory issues and am still enjoying my Marlboros.
And, except for the 2 weeks when I had the radiation to the bone mets, I haven't felt the slightest bit sick or fatigued the whole time. So I would advise you to relax and be happy for your father and his decision -- he's already lived over 10 months feeling much better than he would if he were doing chemo/rad and he's still going strong, bless his heart. None of us knows when we're going to die (and life is 100% fatal ) but some of us are pretty clear on how we do not want to live. Lots of luck to you and your dad! -
Hi Linda. I had 14 radiation tx to my pelvis and lower spine. My side effects were pretty constant queasiness and extreme fatigue. It's been a couple of weeks since the last treatment and the queasiness is just now subsiding and the fatigue is lessening but not gone. Good luck.
-
Hi Sandra.
When I read you're taking Gabapentin, I was going to post this advice not to drive but figured 'Nah, she probably obeys those warnings on medicine bottles, unlike me.' But then I saw your thread on the 'drive' and came back here. Please do not drive while taking Gabapentin (aka Neurontin)! I was taking it after back surgery 8 yrs ago and thought it had no effect -- until I fell asleep while passing in the left lane of I-95 just south of Philadelphia at 2:30 in the afternoon!!! It was the only time in my life I've ever fallen asleep at the wheel. Luckily, my clever Toyota aimed for the left and I was awakened by the scraping noise of my hubcaps rubbing against the concrete median barrier. Had it veered to the right, I'd be history -- as no doubt would be the poor folks I'd have crashed into. (It's a very busy stretch of highway.) I had not felt sleepy and had no inkling that I was about to doze off. Never took another Neurontin, which was no loss since it wasn't helping the pain at all. If yours is, please find someone to drive you! Good luck.
-
Hi Ned.
Instead of the backpack, you might want to try a back brace, esp one that comes with a rigid insert over the lumbar area. It should be easier on your shoulders.
Good luck.
-
I hope to make this one! I'll email you for time and location.
Thanks.
-
Hi Ned. I think the short answer to your question of how you can distinguish back pain due to bone mets from back pain due to injury/degenerative processes is that sometimes you can't. Here's how I came to that conclusion:
Background (no pun intended): Chronic lower back pain (like since high school!), finally had back surgery in 2000 to fuse the L4-L5 and L5-S1 joints. Surgery was botched and of no help but I learned to stop complaining.
Fast forward: Dx 12/07 with NSCLC with mets to pelvis (beginning precisely where they'd harvested bone in 2000 for the back surgery, hmm, rear left iliac crest) but it didn't hurt at all. About 2 months ago, I felt pain in the right groin and hip and they found a met on the right side of the pelvis hitting the top of the femur. Then I developed good old sciatica -- shooting pain down the right leg, sensations of burning and stabbing in right leg and foot. This I was sure was not from a met since it felt like the sciatica I've been prone to lo these many years. Well, I was wrong. A third met had formed on the L3 vertebra, on the 'inside', facing the spinal cord (actually cauda equina at that level) and poking into it. And it was the L4 nerve root being poked, which doesn't exit till the L4-L5 space. So it was the same nerve root that I'd always had problems with, only this time caused by a bone met instead of a degenerated disk, and higher up in the spinal column than the disk was.
I agreed to 14 radiation tx to nuke the right side of the pelvis and the L3 vertebra. The L3 vertebra problem disappeared the second week of tx and has stayed away; the right hip/groin still hurts like hell but I'm told the radiation could still do its thing.
Anyway, the lesson for me is that all pain is something impacting somehow on some nerve and the affected nerve doesn't care whether it's a tumor or a piece of spinal bone collapsing on it or a bullet or whatever -- it just hurts. Btw, my original met (left rear) is now quite huge but is still totally painless -- not near any nerves or moving parts.
So maybe mention the problem to your onc. Just stay away from neurosurgeons no matter what it is.
In the meantime, you might want to try large doses of Ibuprofen (800 mg at a time) -- it works pretty well for me whereas Oxycontin etc do nothing.Good luck! And aloha from Philadelphia.
-
-
I realize you're asking only for those who've done chemo/rad to check in but I figured I'd add my 2 cents for comparison.
I was diagnosed December 2007 with Stage 4 NSCLC adenocarcinoma with mets to lymph nodes and pelvis. I felt fine -- only symptom was PEs and have been taking 2 shots/day of Lovenox for that. I opted to do no chemo or rad.
July 2008: Lung tumors (3) termed 'indolent' -- no change there, so far. Lymph nodes may be growing and spreading but no symptoms. Bone mets growing and spreading -- new mets to pubic bone and to L3 vertebra. Bone mets now causing some pain and have been warned that stress fractures are highly possible so I've agreed to do 15 sessions of radiation to the pelvis and L3. (The discomfort is handle-able with Ibuprofen -- it's the fracture threat that made me change my mind.)
My performance level is still judged to be 0 or 1; no cough or breathing problems; blood O2 still high 90s. And I'm still happily smoking.
(I will smoke as long as it's pleasurable, which it still is.) No colds, no nausea, no constipation, no fatigue, no weight loss, nothing but a few achy bones. Just thought some might be curious as to one possible scenario with no chemo, rad, or surgery.
Ellen in PA
-
Hi Michele.
I know how you feel. My mother died when I was 19 and, when my father remarried 3 yrs later, I cried my eyes out.
But now, being 64 and having been married to a fantastic guy for the past glorious 41 yrs, I have a very different point of view. And maybe -- just maybe -- it would be not that different from your mother's.
Faced with NSCLC Stage 4, I hope fervently that my husband finds a new partner after I'm gone ASAP! He's 65 and in pretty good health but I'm devastated at the thought of him being alone and especially of him growing old alone. And I make sure to let him know how much I want for him to be with someone who loves him and who he loves after I'm gone.
No one can or will ever take your mother's place for you. But there's a reason marriage vows say 'Till death do us part'... Try to be happy for him that he has found someone to share his life with, difficult tho that may be for you. And good luck.
Ellen in PA
-
Spring 2007 I noticed I was getting SOB when walking my speedy little dog. In early July I mentioned it to my cardiologist (routine visit since heart attack in 2001) and he sent me for a stress test. I aced it and figured I was just showing my age. Got more and more SOB while walking the doggie, would stop and sit on a stoop, and would feel better and continue. On Thanksgiving night, there was no stoop on the block I was on -- and I passed out. Gashed my forehead and so went to ER -- they insisted on admitting me to see WHY I'd passed out. Kept me for 3 days, did all sorts of tests, and came up with 'pulmonary hypertension' and told me to go back to my cardiologist.
A week later I passed out again and made an appt with a new cardiologist, closer to home, for Dec 26. She heard my tale and sent me for an immediate chest CT-scan. The radiologist looked at it and called her while I was getting dressed, telling her I had a bunch of PEs and what looked like lung cancer. The cardio told him to have me wheeled to Admissions and she'd meet me there. They admitted me and put me on Heparin etc. I was in the hospital for two weeks, during which time they ascertained that I had adenocarcinoma of the lung with mets to the lymph glands in the chest and to the pelvis, thus Stage 4. Btw, the first hospital did a chest x-ray and (as I learned a month later) the radiologist wrote 'possible pneumonia' -- but nobody noticed the PEs or the cancer and nobody followed up on the 'possible pneumonia'. That was Jefferson in Philadelphia, if anybody's interested. The second hospital, where I was basically diagnosed in under a half hour, was HUP and the remarkably astute cardiologist there was Dr. Susan Wiegers.
-
Well, I'm (naturally) right-handed and my primary tumor is in the upper right lobe. At least some of us are consistent.
;) Ellen in PA
-
I guess I'm the junior member of this group in that I was diagnosed not quite 6 months ago. No noticeable change since dx except some aches from the bone mets in the pelvis area and they respond very nicely to ibuprofen. Re smoking, I've smoked for 53 years (yeah, started at 11) and will continue to do so as long as it's enjoyable. (I still have no cough or breathing problems and still have lung function over 90%.) My only 'treatment' is two daily shots of Lovenox for clots -- I had pulmonary embolisms and was SOB and passed out twice and that's in fact how I came to be diagnosed. The Lovenox and the vena cava filter they put in have solved that problem. So far, so good, subject to change without notice.
Ellen in PA
-
Like the others here, I can also vouch for life after blood clots. In fact, pulmonary embolisms was how my lc got diagnosed -- I passed out twice while walking my dog, my cardiologist ordered a chest CT scan, and I was admitted immediately and diagnosed (NSCLC Stage 4 adenocarcinoma) within 24 hours. They also inserted a vena cava filter to catch future clots within an hour of the CT scan. That was back in December. In the hospital I was on Heparin and at home I give myself two injections a day of Lovenox. Annoying but no big deal. And, of course, I hadn't had any chemo at that time. (Still haven't had any and don't expect to.)
Good luck to you and your mom.
Ellen in PA
;) 
And, except for the 2 weeks when I had the radiation to the bone mets, I haven't felt the slightest bit sick or fatigued the whole time. So I would advise you to relax and be happy for your father and his decision -- he's already lived over 10 months feeling much better than he would if he were doing chemo/rad and he's still going strong, bless his heart. None of us knows when we're going to die (and life is 100% fatal 
In the meantime, you might want to try large doses of Ibuprofen (800 mg at a time) -- it works pretty well for me whereas Oxycontin etc do nothing.
Does It Never End???
in LC SURVIVORS
Posted
Hi Patti.
As you can tell from my bio, I'm not very much in favor of lung cancer treatment -- BUT I did do radiation to my lower back and pelvis and it worked like a charm! The pain from the lower back met subsided halfway thru the treatments (14 was the total number) but the pelvis/hip pain didn't go away till maybe a week or so after the last treatment -- but go away it did! So hang in there. We're all rooting for you. Btw, before the pain was alleviated, I found massive doses of ibuprofen to be the most effective at controlling it, like 800 mg up to 4 times a day (along with famotidine so it doesn't burn a hole in your stomach). Everyone is different but ya never know. Good luck and please keep us posted.
Ellen in PA