twodogs

I had back, neck and shoulder pain for over a year before DX. I'd gone to every doctor and clinic within our area of the world and had had MRI's, X-Rays, injections and pills but nobody knew why I was in pain. When I developed SVCS I thought it was a reaction to Aleve. Shortly after beginning my Chemo ans radiation routines all the back pain went away. I do get spells now and again but not at all as severe as before they found the cancer and started treatment.

Barb, Thanks for the boost. Tomorrow's CAT Scan day again followed by whatever blood I need and then Chemo I suppose/hope. Last time took thirteen hours end to end but just reading your update makes the anticipation a lot less gloomy. Congratulations to you. John

Creekgirl, Sorry to hear about your reaction to Taxol. I got my first dose of it last week and seemed to come through it alright. I did get a bit of a light show but I've been afflicted with those for several years now and never know if it's the drugs or just some short circuits in the brain matter. My wife did tell me that I was pretty red and flushed for a couple days but I didn't seem to have any new or strange affects that I actually felt or saw. I did get my first Benadryl Bounce though. I was as goofy and drowsy as I've ever been without going 'lights out' and suddenly my legs thought they belonged to Elvis. I get another round tomorrow and I'll report back if anything wierd happens. Hang in there and remember, we're all pulling and praying for you here. John

Please forgive the 'Military', 24 hour clock times. I sent this update to a bunch of friends who are used to it and it makes it simpler for me to just do it once. I was typing it up after midnight. Yesterday we put in a little over thirteen hours running Doctor/Test/Chemo/Transfusion drills. Everything started with the old 0530 wakeup and GI shower drill and on the road by 0630. 0730.....Marilyn sees her Neuro Doc for her annual visit and blood test reviews. Doc decides to continue monitoring blood levels and work with Moorcroft Doc. 0800.....Marilyn Has blood draw for Moorcroft Doc. 0800.....John has blood draw for 1100 meeting with Oncology Doc. 0900.....John has Cat Scan for later appointment. Injection fittings remain in right arm for later use. Two Hour break for Wal-Mart trip, oil change in Explorer, Albertson's trip for chocolate coated, cream filled Bismarck's and other various and sundry tasks. 1100.....John Meeting with Oncology Doc. Blood counts low, will require three more pints, (units) today. Latest Chemo cocktail was ineffective against relapse. Switched selection of primary chemo type. We had anticipated this. 1130.....Begin regular chemo/blood routine. Blood was not ordered early due to need for count data prior to ordering. Procedures, ya' know. 1230.....Starting chemo prep work. 1300.....Pre-chemo flush and fill; consists of saline solution, Decadron, (will buzz the crap out of me tonight and tomorrow), Benadryl, ( instant knock out, date rape drug) and Zantac, (stops vomiting and erases memory from Decadron decadency). The Blood has been ordered and is on the way 1330.....Chemo begins to flow into left arm. Blood arrives on-site and hookup begins. We are using the last available type 'O' blood in stock. Wonder if it's a FIFO inventory system??? 1400.....Blood flows into right arm. 1600.....Chemo finished up and lines flushed. 1630.....Last blood packet hooked up to right arm and put in ‘Park’, until needed. 1700....#2 blood unit complete and switch to right arm blood input. 1830.....Finish up blood transfusions. Swab up, clean up and get 'bye-bye' hugs. 1900.....Arrive at meat market at 1905. No big deal, market closed at 1800. 2005.....Back at the ranch. Actually we got about what was expected from this latest chemo treatment. It was the same I'd had four years ago, (CPT-11), and the Doc expected my system would have a resistance to it. The new stuff should do better, (fingers crossed). My current cancer indications that are active are mainly an area that started out about 2.16" long and then dropped to around 1.88" then grew again to about 2.00'' during these recent treatments. It's still smaller than when we started but it's active and that is not a good thing. The new drug I'm taking is called Taxol. From what I've read It is a very good drug and very effective for some patients. It's not usually used for Small Cell on the first go-round but is common on relapses such as mine. I believe he said the indications in the lymph nodes are no longer active. I know this is a very critical concern but my old memory holder just ain't working too well. . Since the meat market was closed I've been forced to eat cherry pie and ice cream for dinner tonight followed up with ‘Turtles’, for dessert. Marilyn had a Root Beer float with some real ice cream in it. Kind of going for the gusto here. John

These folks already gave you the facts, all I can offer is more encouragement. This is called the Survivor's Board because that's what we are. We're here, they're here and you're here and many of these folks have beat the odds by a wide margin. There's no end to the possibilities but it takes the will and strength to keep on keeping' on. We know you have both and will continue to pray for your success in beating this. John

I was so eager for a ruling change I misread the post. I thought it said the ruling was relaxed. I had been on Epogen for four years and recently had to go on transfusions due to this ruling. So far I've had two, (for sure) , rounds of three units each time. If we make it to the Cancer center by 8:00 AM for blood work we're usually out between 4:00 and 6:00 PM. That's a pretty darn long day with chemo in one arm and blood in the other.

Nonni, I'm not upset and I'm not offended or irritated or concerned. We all deal with stuff in different ways and I only wanted to share my opinion, not change anyone else's. We probably give some amount of $$, time and support to everything that has Cancer as part of its name and will continue so long as we can. My Cancer Center treats everybody, including the occasional juvenile, and we see ourselves as being in this mess together, regardless what part of our body is affected. Our drugs all come from the same technicians and the same staff administers them no matter what the illness. There's a running joke about one of the gals who works there and has had a radical mastectomy and chemo. When we were being treated, side by side, she used to always fall asleep from the drugs. The staff still teases us both about her sleeping with me every Friday. As I said previously, take it for what its worth. Bless You and Best Wishes, John

Please take this for what it's worth. My entire life I was exposed to asbestos, wood smoke, processing plant smoke, refinery emissions, radiation, carcinogenic chemicals a liberal exposure to alcohol and pipe, cigar and cigarette smoke, (self induced). When I turned 63 I was DX'd with SCLC. Just before that my little nephew was diagnosed with childhood leukemia at around four years of age. He underwent extensive treatment for that and is now in remission. My daughter was diagnosed with breast cancer just barely past her fortieth birthday and just after my DX. She has had a partial mastectomy and a radiation series for that and is still undergoing treatment. No one knows why either of them are cancer victims. I am not so self absorbed as to want to put myself on the cure list above either my baby girl or my baby nephew. So far as I am concerned, any money that goes to cancer research benefits all of us. And more power to those who raise and donate those funds. They are all angels and they are here for all of us.

Nonni, It's my understanding, after several years here, that X-ray is probably the least desired method of detecting the cause and location of worrisome indicators. I believe you are getting good counselling from your Doc's and our angels. The scans are the best approach. Prayers and best wishes. John

My Radiation and Chemo Onc's always seemed to be fighting like the Odd Couple during the early part of my treatment. The Chemo guy figured he was prime and the Radiation Onc knew that she was. They both had my interest at heart and were each pushing their own strategy. I did the full rounds of Chemo, Radiation and PCI and things were pretty darn good for four years. I guess I always had some residual junk in there also that I don't remember even being told about. But that's no matter, I'm back into the breach right now but still have the utmost faith in my Chemo Onc and his staff who have now taken over again. I miss the Radiator too as she's moved up to Billings but I still check on her as we became friends through all this. So, what's next for you folks? I don't know. I just know that between the continuous prayers of my friends and family, the Grace of God, my Oncologists, Medical Science and the support of all the angels who hang out here I'm still in the game. Down the line I would hope and expect you and Mom will be also. John

I was on Statins for ten years before my cancer DX. I did all the 'OR' drugs, Lipitor, Crestor, Zocor and probably mORe. I knock off taking them during treatment as I'm back into now. Assuming I'll relapse again,(please), I'll likely go back on them as I am quite hypertension prone. John

If I read the report right, Dr. Bach can kiss my bachside. After a year of unexplained pain, cough, allergic reactions and malady after malady an ER doctor finally wouldn't let me go home until he did the Spiral CT. Bingo. SCLC with SVCS. When I asked why nobody else caught it earlier he simply stated that insurance wouldn't pay for the CT as a regular procedure. They'd pay for misdiagnosed neurological surgery or spinal surgery along with MRI's, etc. etc., though. JMO John

Thanks for dropping by and best wishes for you and your future. John

After I had received both Radiation and Chemo for Small Cell Lung Cancer it was recommended, but not required, that I receive PCI. I elected to have the procedure but don't know what to suggest, not knowing your situation or even if it is an option in you case. John

I've still got my '84 XR-250R which I switched to from an RM-465 when I retired from dirt bike racing in 1984, (is that a duh? moment). One thing I do every summer is clean it up, start it up, do a couple laps around our two lots and pretty much winterize it. The thrill never goes away but I hardly have the weight and/or energy to kick it over anymore. And this time of year, every year I drop down to the Harley shop and check out the new Sportsters. I'm tellin' ya' it just don't go away. Scratch the itch.

Tom, I can never find the right words at a time like this. May the Good Lord wrap your family and your beautiful daughter in his love and grace. You have our prayers and best wishes for the future. John

Thank you for the replies. I tried to do it earlier but probably had one of my "Chemo Moments" and must have deleted the note. Or possibly forgot altogether. John

I think these pains are very common and may actually predict lung problems. I spent over a year before my diagnosis trying to get pain relief for these complaints. Neck pain, shoulder pain, back pain, bursitis, arthritis and every other symptom mentioned. I have noticed and commented several times that these pains may be one of the major clues that we have lung complications but they go undetected. Too many spinal, sports, neurology and other specialists looking for their favorite ailments and not anywhere near the depth needed to find the real causes. One suggested I should undergo neck surgery and another said it was a torn rotator cuff and I needed surgery for that. When I finally developed SVC I was convinced it was a reaction from the Aleve I'd been taking for my back/neck pain and even convinced one doctor I needed a steroid shot and got it. That was two days before I went into radiation treatment for SCLC which an ER doctor detected when I went in for another pill or injection. Early on during Chemo and radiation I had absolutely terrible bursitis and the shoulder "pointer" pain. I did notice that later on in my Radiation and Chemo treatment I didn't have near the back/neck pain and I hardly have any nowadays. Not much of a story here and mixed up at best but I share it with anyone who has been experiencing the same symptoms without getting any relief. Keep looking until you find the answer.

Okay folks, I've checked the Medical Dictionaries and the Standard English Dictionary and our very own Glossary and haven't found the definition of "Infrahilar". I've found it being used but not defined. I found out yesterday that there is some..."interval decrease in size of infrahilar right lung mass and right side pleural effusion. .." I'm told that this is good news but it would probably be even better if I actually knew what it is. Any help??

Geez, this has been fun reading. I don't know how many dumb comments I've heard but most of these sound familiar. Especially those about the smoking and the know-it-all comments from the non-participants. One I remember fairly well happened early on in my treatment. I was pretty weak and miserable but I made it to a regular community shooting event where I was mostly observing things. One of the regulars came up and asked me how I was doing and I told him that I was on both chemo and radiation treatment due to the fact that my condition was inoperable. His dimwit reply was "Oh, you must have the good kind. I did reply but need not burden you with the specifics. Once again, this is great thread and we need to do more of it. It must be the good kind.

Thank you for sharing. It's great to hear things do turn out like they did for you. John

Thank you all. We each know how important prayer and caring and sharing are to keeping up the spirits. My blood counts today were very good especially for me. Not all 'normal' of course but we all set our own new normal don't we? Didn't need any more blood so it was just a quick round of chemo and I'm back home. One more round next week then skip a week. Following that it's another CAT Scan and hopefully, continue the routine for however long is necessary. Remember gang, this is a two way street and I'm pulling and praying for all of you too. John

Well dear friends, here I go again. I made it to my fourth anniversary on June 26th but it wasn't as joyous as I'd hoped. Just prior to our planned annual pilgrimage back to Michigan, in early June, I went in for my regular blood draws and a CAT scan. At that time they noticed some amount of activity in an area of my chest that had been inactive since 2003. Also, since having stopped my Epogen injections, my blood counts were pretty low. A subsequent PET scan revealed that two small areas of concern did show an uptake. These are in the lymph nodes near where my original tumor had developed. The Doctor almost immediately started a routine of Doxcil and Gemzar, (I think), this even with the low blood counts. From there I was supposed to go on a schedule of one round of chemo per week for a month. By the end of the first week my counts were so low that he discontinued the treatment and had me rest up for three weeks. Followig that period I had another CAT scan last week which indicated the area had not increased so, I had three pints of blood transfused to raise my counts and went back on a weekly routine of Carboplatin and Camptosar, (CPT-11), which I had also taken back in 2003, plus blood as necessary. I go back in tomorrow for a draw and then chemo plus whatever additional blood I may require. There is some more drama that goes along with this story but I'm still trying to get my arms around everything. That part will have to wait. For right now I'm back in the role of patient. Thanks for listening and keep the faith. John

Great news about Dad. It's hard to believe but wonderful to hear that it's been a whole year already. I do recall how stressed and anxious you were when you first got here. Tell Dad congratulations from me and my prayers are with you. John

Cindy, Congratulations on the excellent news and we do know how you feel about the anxiety issues. Our DX anniversaries must be pretty close. Mine is 6/26/03 and I go in for my semi-annual CAT scan on the 7th. Each of us here inspires someone at one time or another. One of my biggest pity parties was when my daughter was DX'd with breast cancer near the same time you were. I found the waiting and worrying over her worse than it was for myself and here you were, facing both problems yourself. My prayers are with you my friend. John