IIIp0 Posted May 20, 2004 Share Posted May 20, 2004 Hello everyone~ I'm writing for my hubby. What a week this has been! FIRST: His brain scan [CT] came back with several 'differentials' that it could be but basically inconclusive. He's scheduled for an MRI on Monday. Frankly, we're not tooo concerned because the many 'typical' symptoms he had previously improved with the 2 pints of blood platelets! Hemoglobin up from 7.2 to 9, but red/white counts still too low for last CPT-11 round. Will try again next week. We're confused now about this terrible debilitating pain he's getting in the small/lumbar area of the back: initially he was diagnosed with tumors up and down his spine; but it seems that his back gets better or worse at times, so -- if it were tumor it wouldn't change necessarily [meaning, some days his back is terribly swollen and painful and others he's just fine]. His new onc thinks it's a deterioration of the spine [that's just come about????]. In other words, he never had this pain prior to his cancer troubles. I don't know anymore I tell ya. The other good news is that Neuropathy has dissipated for the most part, with the change in chemo, thank Goodness~ Now we're pretty much contending with extreme back pain down the front of the legs and praying for a clean MRI~. Then, doc is talking about a rescan after last CPT-11 and possible change to Taxotere. At least it does sound like more good news than bad though, huh??? The bad news is that he's lost around 20 pounds this month on the CPT and has extreme muscle wasting.... No matter what I give him to eat [nutritionist-recommended drinks, vitamins, etc.], he doesn't gain..... THAT is worrisome for me. Thanks for listening to the latest update~ Beth ================ husband diag. w/Stage 4 SCLC 12/03 Mets to liver/spint/femur 13 'events'/sessions of Carboplatin/Taxol, but developed painful neuropathy. Neurotin 900 mg/day Switched to CPT-11; neuropathy abated Low blood counts - having to postpone chemo 3 times! Hemoglobin up from 7.2 to 9. Still exhausted. Painful lower back. Dr. Prescribed 50 mg of Duragesic Patch but breakthrough pain. Will get on "lolipops" for breakthrough~ "Special" loliipops, hard to obtain.... Hum........ duno what it is yet. Quote Link to comment Share on other sites More sharing options...
jamie Posted May 20, 2004 Share Posted May 20, 2004 Beth, I dont have any answers or advice for you, cause Im pretty new to all of this... but just wanted to wish you the best luck with all of this! Jamie Quote Link to comment Share on other sites More sharing options...
tess Posted May 21, 2004 Share Posted May 21, 2004 Has he had a bone scan lately? My husband had mets to his hip, excruciating pain. It didn't even show up on the bone scan. Once it got radiated, within 3 days the pain was gone! Still no more pain there. Hope you find out soon and get it treated. The sooner the better. Tess Quote Link to comment Share on other sites More sharing options...
MayFrog Posted May 22, 2004 Share Posted May 22, 2004 Hope you get to the bottom of the spine/leg pain.....in the meantime, about those "special" lollipops.....they are actually fentanyl in a fruit flavored lollipop base. They taste ok and do pretty well for break-through pain. My husband uses them for breakthrough back pain. My thoughts are with you.......Mary Quote Link to comment Share on other sites More sharing options...
IIIp0 Posted May 28, 2004 Author Share Posted May 28, 2004 Well -- it appears from the new MRI or CT scan of the brain and spine that my husband will have whole brain radiation and radiation to the spine starting next Tuesday every day for three weeks!~! I am scared to death, terrified actually. I hate this disease. There seems to be not a lot of positive articles out there [now that I know what the recommendation is] for whole brain radiation any longer. My husband was having excruciating out of control pain in his lower back which necessitated more scans so while they can pinpoint this area, the doctor feels that if we 'see' one tumor in the brain [and it is small]; that we need to treat the rest propolyctacally [sp] because there are more there that can not be seen. Now I respect this radiationc onc. and he has come highly recommended; and I sure would feel more comfortable hearing from anyone here who has had whole brain radiation and what the side affects were. I pray they aren't as permanent as what I was reading. I've decided I'm not going to do any more reading on the www -- it's tooo depressing; TMI [too much informatin] and I'm tooo scared to want to know too much more. I'd rather hear it from ya'll. Thanks, and prayers please for us. This is the most scariest ride of my life! ================ Beth - Husband diag. 12/03 w/Extensive stage SCLC w/mets to bones, liver 13 treatments of carbo/taxol, developed neuropathy extreme pain switched to CPT-11: 2 treatments; low blood counts Chemo on "hold" until radiation completed. Quote Link to comment Share on other sites More sharing options...
Addie Posted May 29, 2004 Share Posted May 29, 2004 Oh, Beth....sending my best prayers hubby's way and yours. I am really new to this whole thing myself...but I just want to say, you're wise to stop reading too much on the net. I think a lot of the info out there is dated and dismal and far too lacking in hope, which is one of the intangible miracles with a diagnosis like this! Keep your hopes up! Stay as positive and as informed as you can...but don't rely on what you read on the net. Every time I could feel my blood pressure rising (just after my dx when I was searching out everything on the internet)....I just closed the window and stopped reading. It was getting to be too much....and I found I got a lot more hopeful info right HERE and from my own medical team. (My internist has been a brick....even let me call him at home whenever I needed to! ) Hang in there...BREATHE deeply to calm yourself....and know our prayers are coming your way. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 29, 2004 Share Posted May 29, 2004 Beth, Everything will be ok with the WBR. My husband had WBR because he had so many brain mets, and then a couple months later had Novalis treatment (a fairly new state-of-the-art stereotactic radiosurgery that is done with a new machine called "Novalis" that pinpoints each tumor and gives it a megadose of radiation - other similar procedures are called gamma knife and stereotactic radiosurgery). The doctor is right that there could be areas that cannot be seen. My husband had some confusion and was sometimes slow to respond toward the end and after the WBR and it scared me to death, but after a reasonable time, those things began to disappear and now his mind is as sharp as it ever was. Our onc told us that if serious side effects are going to happen, it is usually years down the road and asked us not to worry about that - so we didn't. I will pray for you and your husband. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Dollfan19 Posted May 29, 2004 Share Posted May 29, 2004 Beth, I have been following your postings....my husband didn't have anything close to what your hubby is experiencing. Sorry I can't help you at all. I just wanted to let you know that I am here for you, always. Take care of your hubby....cherish the love you have and try to stay positive in front of him. He needs you. Lots of love and prayers for you....along with all my strength. Abby Quote Link to comment Share on other sites More sharing options...
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