Addie

Best wishes headed your way, Rachel. Hope they get to the root of the pain...but I'm joining you in fervent hopes that it ain't "the nasties". Yoicks...50 lbs? What did they think you used to do for a living...linebacker for the Raiders? I used to lug a 40 lb bag of kibble to my car like it was nothing. These days, unfortunately, I'm happier just carrying a bag of yarn! Let us know how things go. Vibing all good things your way.

Geez, Trish....isn't that a bit of an insult to Hamsters?

Hi Fred..... It's nice to finally meet Kasey's "sanity" And we are glad to know you feel her hanging out around here has extended her life...but you know what? I betcha it's much more a product of Kasey's own spirit...which she shares here so willingly! She may well be helping keep a bunch of US around for longer!! However it all works...we're glad to have her here and we're glad to have you too! I'd call us birds of a feather hanging together...but a good many of us are...uh....without feathers, if you catch my drift. Today, I used double sided tape to attach a bow to my head. Now you tell me another website where you'll find somebody admitting to that!! Go hug your wife for us. She's a treasure!

It's one thing when lay people don't quite get it right....but medical personnel? Musta made you feel almost like the assistant was hitting on your hubby or something, right in the middle of taking down YOUR symptoms, eh? For us, and speaking strictly about the public (not medical types)....people are always asking my hubby how I am. Rarely...and I mean, RARELY, does anyone say to him, "...and how are YOU coping with all of this?" I've told him tons of time...if someone asks how I am...he should tell them (if he wishes), "Why don't you call her up and ask her yourself!!!" He really gets weary (as do I) of people who ask after me when it's easy...when they run into him. But do they think to ever pick up the phone and actually call to talk to me? Hmmmmmm..........no! And worse, they don't even think to acknowledge HIS stress and ask how HE is doing!! There has to be a balance somewhere. As a patient...and one who considers herself lucky NOT to have suffered horrible side effects...I still realize that in some ways, all of this has been harder on my husband. Men tend to be "fixers". Problem solvers. Give them a dilemma and they figure they'll come up with a solution pronto! Well....not when it comes to cancer. This ain't like replacing a burnt out light bulb....is it? Don't know about your hubby, Fay...but mine has spent some hours being One Angry Man. Matter of fact he's spent some days and weeks being One Angry Man.....because HE CAN'T FIX THIS! Again....there must be some balance. It's not easy being the patient...and it's not easy being the caregiver...but the stresses are NOT 100% the same. My hubby has said he won't care about much else if I'm not here. I can empathize with that...as I've buried all my family of origin but one. But we patients face the "not being here" part....or perhaps dying before certain events happen that we very much want to be here for. Okay, sure....we all run the risk of getting sideswiped by that beer truck of Becky's at any time. But when you have cancer or have had cancer...it's an insidious disease and it plays an insidious number on your head. Shucks....I've gotten way off on a tangent here. A related tangent, at least...but the point is...that doc's assistant was off base in directing the bulk of her sympathies to your hubby, Fay. Not discounting that it can't have been easy for him watching you go thru this....the operative notion there is that you were the one who WENT THRU THIS!! Early after my original dx, one day my hubby let some of his anger out. He said, "I can't believe this is happening to me!" You'd have been proud of me. I didn't say a word at first....although you have to KNOW I was thinking...."This ISN'T HAPPENING TO YOU, YOU SCHMUCK....IT'S HAPPENING TO ME!!" Actually...it was/is happening to US!! In differing ways, to be sure...but it is happening to us just as YOUR situation, Fay, is happening to you AND your hubby. Anyone in the medical profession that doesn't really GET THAT....ought to see a career counselor!

Oh, Peggy...I wish I could wave the magic calming wand for you....and know it would work. I don't have any specific experience or wisdom about any of this to help you with. All I CAN tell you (as something that sort of relates) is this: When my cancer came back after just 4 months of NED...the rad report from the gut MRI said four tumors in my liver and, "...multiple masses" in my pancreas. Nothing else...just multiple masses. Talk about panic? I figured my poor pancreas was overrun by the little cancerous suckers and I was doomed. Three treatments later, the four liver tumors were reduced by half and my pancreas "appears normal". Three more cycles of tx and a second CT and, "pancreas appears normal" still! My point? Don't get all panicked over what you're reading. Ask questions, sure....but sometimes these medical types have a way of putting things that strikes FEAR into our hearts...and a month or two later...things look a lot better. The Novalis doc will know what he can and can't do. And Don is willing to fight. So take this a step at a time and trust that they'll do what they safely can do for him...ok? Know we're here for you to vent...especially if DH would rather not discuss things right now. Sending all good thoughts your way, Peg. Deeeeep breaths, okay? Keep us posted.

Great to hear from you Karen. I guess an email or two from me was lost....as I did write to check in on you. Sounds like you are coping even with all that remains to be settled in your life. I hope the move goes smoothly and that other issues do as well. Know that you're thought of and that good wishes are coming your way. Hugs to you and Faith....

Omigod Katie.....PLEASE, PLEASE tell me that Cin's new password isn't ARMPIT!???????? Nice goin', Cin. I mean if you want a couple hours off from tending the bar...just ask...you don't have to get yourself banished! Sheesh. And Fay.....86ed or relegated to the Round File are nice ways to put it. There is also the less decorous $h*t-canned, too! Never trust a tipsy bartender! (Or, while I'm issuing warnings here....never trust a naked busdriver either! ) Glad you're back, Cin. My ice was starting to melt. Now...since you had all that time off the computer....tell us.....did you shave that other armpit yet?

Precious memories, Ry. Love that Tyler grin...and hope he always finds cause to remain so happy throughout his life! P.S. Who'd he bonk with that wooden hammer?

I'm sad for Cathy and her family...but glad she has them around her at this time. Best thoughts and wishes go out to all of them...and thanks, Ry, for checking on her. I hope her DIL does pass it along that we all send our best to her.

Interestingly, sealbeachjim just posted about the Issels Clinic....his first post.....a few days ago. Perhaps you might contact Jim and ask about his experience. Apparently he had a miraculous recovery. sealbeachjim's post can be found in the Newcomer's forum. He's not posted since that first post on 7/3. There is a website at the end of his post that will tell you Jim's whole story and then some.

Way to go, Pamm.... We all have our scared and low moments...but that's part of why we come here...to find a way to perk back up again and regain our fight!! Feel what you feel...but just know that you can then DECIDE to keep on fighting, too. We're here to help support you...ok?

Well, crappola Pamm...this is not news we wanted to hear!! Radiating the brain preventatively (PCI) isn't usually done when someone is dxd as extensive sclc. But radiating the brain if there are brain mets often helps a great deal! So you're not fooling yourself, and your rad onc is doing what he can to rid you of the brain tumors AND any future seizures. BELIEVE that it will help...that it will work. That power of positive thinking really does make a difference, I'm convinced. The radiation will tire you but I'm glad you are otherwise feeling good. Call your onc's office and leave a request for him to call you at the end of the working day. If he balks at that...then make an appointment and go see him IN the office. Now. Tomorrow. As soon as you can get in. It's not good to be stressed over this...so go get some answers from him. And perhaps he wants hubby there to be sure ALL your questions and hubby's get answered. Having an extra pair of ears is a big help. My hubby often caught something the doc said that I missed! Plus...they don't want you driving, you said...so there is another reason to bring hubby, eh? Take a deep breath, call the onc to make an appointment to get your questions answered and keep believing in the good possibilities!! You've still got plenty of fight in you...so grab your "addietude" and kick some cancer butt...okay? Let us know how things go.

Mowing the lawn and trimming bushes is fabulous, Peggy....but if you work this the right way, you could have him ironing, washing windows and scrubbing floors too! Think of the possibilities!! So glad to hear that hubby's feeling better and enjoying the "steroid rush" of energy. Sure beats the heck out of fatigue and lethargy! Tell me, though....does he have any trouble sleeping at night while on 'roids? I'm on a really low dose (actually I take prednisone for polymyalgia) - just 3 mg. daily which I DON'T take on chemo days when I get the Decadron. And I'm up 2-3 times a night to use the facilities...and then have a helluva time getting back to sleep. Is DH troubled by getting so wired he cannot sleep thru the night? Am otherwise so delighted to read your Wooo Hooo thread...as it reminds ALL of us to take a moment to count our blessings....even when things don't otherwise seem so blessed! Thanks, Peg!

Oh, Kathi.....I'm having a "feel sorry for myself" morning...and then I come here and find your post and feel ashamed of myself. I'm so sorry, honey. I know how much you adored your Pops and he, you....and I know this will be a hard loss for you. It sounds like his passing was very gentle though....and for that, I'm sure you're grateful. Again, my most sincere sympathies and Godspeed to Pops. He was a lucky man to be so loved and I know he'll be keeping a watchful eye over you. Thinking of you and hoping you soon find comfort in all your wonderful memories.

Sending healing, soothing vibes your way, Dean.

Sending all good thoughts and wishes for your mum...and hoping things will turn around soon for her. Keeping your family in my hopes for strength. Report in to us as you can...but most important right now is spending time with your mum...so know we understand if you're not posting much. All good thoughts headed your way....

Aw, TAnn...just spotted this post. I too, am sorry to hear there's been some progression...but I love your attitude...and hubby's too. Keep on with your efforts to kick some cancer a$$ and I really hope the Alimta does the job for you! It is a good thing that you got such a long chemo break...as it's probably given you the mental strength now to be ready to attack again. Keep us posted as you can...and know we're all inspired by your spunk and readiness to fight! Wishing you the best and sending all my good vibes for you!

This is the best part of your post, Pat! And that optimism and positivity will help...I'm convinced of it. I'm sorry too, to know of the progression...but it sounds like the onc has a plan...and I want to also second FayA's advice about the paper masks. I've got some here...and have used them when my WBCs were very low...when my son and his girl came over. Tell Bri to stock up on some good books/movies/magazines...whatever floats his boat...and then lay low, concentrating on building up his strength. We're pulling for him AND for you too, Pat...to be strong...stay strong...and go after these tumors till they start to shrink! Sending all good vibes and thoughts your way. The Brat team has lots of spunk...and I know it's going to help! Sending a big hug, too....

Oh, Pat...I hate that this is happening...but am holding out for some options today, when you see the doc. Know that you're in my ongoing conversations with God. I want for Brian to see some improvement and lessening of his fears...and for you to find the strength to get thru whatever comes. But mostly I'm hoping that the onc will have an answer for the progression that will WORK. I was whacked sideways when I learned that my cancer had shown up in liver and pancreas. But I'm doing fine at the moment....stable, at least, with some possible shrinkage since the initial 50% shrinkage. It's all a matter of finding what works...and believing that it CAN work!! I hope the onc will find something that will work for Bri...something you both can believe in! Know we are here for you...and maybe you should ask the doc for something to help you sleep? You need to keep up your own strength and not get sick from lack of rest, Pat. Think about it. A little Ativan might just do the trick! You're on my mind....keep us updated when you can.

Oh, Melanie...I'm so sorry about your gramma and also your situation. But what a blessing that you are wise enough to know and treasure your relationship with her...AND the value of that quilt! You're a smart girl to know that that piece of family history is a TRUE family treasure! I'll be holding you both in my best thoughts and wishes for all the comforts, joys and memories you can pack into any remaining time for her. And it might not hurt to hope that her cancer is not pancreatic...but from somewhere else that might just make things a little easier in the end. Best thoughts to Grandmother...and you too, dear, to have some wonderful moments working on that quilt and teaching your niece how to carry on with it.

I had 13 sessions of PCI (Prophylactic Cranial Irradiation). The dosage of radiation is smaller for PCI than for whole brain radiation - done when there ARE mets to the brain...and each rad onc decides on how many days of radiation. I've known some people here who got 12 or 15 or 17 or even 20, I think. But I had 13 myself. It's a lucky number for me, I hope. I don't think one session of brain radiation would likely do much good as prevention.

I felt like I'd been drug thru a knothole backwards after my first cycle of Topo....but now I handle it really well....so I'm hoping that's the way it works out for you with YOUR new combo. Sleep when you need to....take what meds you need to help the symptoms....and keep believing it will improve, as it has already. Hang in Beth...I'm sending you good vibrations and no, I'm not a former Beach Boy but I'm bald enough to play one on t.v.! I'm sending you lots of good, healing thoughts too!

This sucks, Melanie....big time. But you have all my best wishes that they clean that bugger out of your head this time and that it NEVER returns. In your head or anywhere else. Hang on to your hope and belief....and know we're all pulling for you here! Let us know soon as you can, how you're doing...ok?

Shrinkage is always good...at least when the topic is cancer! My onc did NO scans during my 6 cycles of carbo and VP-l6...maybe because he didn't want me asking him, "Is this normal?" At the end of the 6 cycles though...I was NED. For a while. As you know, I'm now after it again with Topotecan and after 3 cycles, I was 50% reduced...but after 6 cycles....either stable OR slightly reduced. I have 4 liver tumors left...but my pancreas appears clean and at least a couple of the liver tumors were slightly smaller. BUT...my onc is happy w/ results and I feel good! So...Uncle Dougie....take what you've gotten as a gift, AND good news and keep up the good attitude and your journaling. It's all good at this point and as others have said, we all respond differently...so "normal" is a pretty hard thing to determine from one person to the next. And anyway, people like you and I may not have EVER been entirely normal - cancer or no cancer - ya know what I mean?

To what is clearly, a solid, lasting match! Congrats to you both...and soon as I can safely do it, I will hoist a REAL drink in your honor!! Meanwhile...it's either a cyber tiddly...or a virgin drink! But the sentiment is sincere any way I drink it!! Congrats, Don and Lucie!