Kim's Update Page

MDA concurs...A Few More Brain Mets

2006-09-28T08:33:00.000-05:00

MDA finally called. I have 2 possibly 3 more small brain mets. Too small for SRS at this time. MDA is recommending WBR (whole brain radiation). WBR doesn't thrill me, but if needed I probably will do it. But, the neurosurgeon's nurse (whom I truly respect) said I could wait another 4-6 wks and mets would have grown enough by then, we then can do SRS. I have more questions b-4 I'll have a decision.

My guess is that I will down the road have to have WBR, but for now, I'd like the other option again to become the "Halo queen" for the 3rd time. WBR is much more debilitating.

I hope to have my questions answered by early next week.

KimFromIowa

Still Waiting to hear from MDA... ARG.

2006-09-26T09:35:00.000-05:00

I've had a few friends concerned that I haven't updated my blog for a mnth. Last week, I overnighted my brain MRI films down to Houston, they arrived Thurs pm. I've called and left vm's, and emailed as well. I was certain I'd hear from my neurologist by Friday. Well, it's Tues and no word yet.

The only worrisome notation is from my home interpretation from the scans. Des Moines noted two new "spots", lesions, mets on brain. Des Moines has been wrong before, so I'm not fretting terribly. Patience has never been a great virtue of mine, but I've learned that stewing doesn't help anyone, especially me.

After I learn more about the brain, I need to follow up with my onc down at Houston to discuss chemo options as well. My 2 cycles (4 mnths) of T & T with Lomustine is done this week. Not sure if they'll recommend the same, or something different.

I'll post soon, hopefully sooner than later.

Kim

They're SHRINKING, they're SHRINKING !!

2006-08-17T13:53:00.000-05:00

All 3 brain lesions (melanoma mets) are still shrinking!! The chemo (T & T) along with the two SRS treatments I had done down at MDA are working and doing what we had hoped.

No news is good news....again and again!

KimFromIowa

CT Results...All Good from Des Moines

2006-08-02T18:52:00.000-05:00

My recent CT scan showed one of my lung mets decreased in size by 50% (awesome). Other lung met showed stable and unchanged. This is good news! The chemo is working on shrinking the lung mets. The chemo was an 8 wk cycle and we'll do it again for another 8 wks.

Another hurdle we have made. Of course I'll send my films down to MDA but I suspect they'll be in agreement with my Des Moines oncologist.

My next hurdle is my brain MRI the middle of August. We are definately happy and very pleased to say the least. You must celebrate with every piece of good news. Today is a great day!!!

~KimFromIowa

MDA - All 3 brain tumors are shrinking !!!

2006-07-27T09:27:00.000-05:00

I assume the folks that check my blog know that I have Melanoma. Melanoma is only skin cancer...NOT! My melanoma has spread to my lungs and brain. I've had two SRS (stereotactic radiosurgery) treatments down in Houston at MD Anderson (MDA). My brain lesions (mets) are reacting and shrinking from the SRS treatments. MDA called me yesterday from my brain MRI films and they're very pleased. The brain mets are shrinking and reacting the way we had hoped. The chemo is also working, keeping new mets at bay!

I'll have a full CT scan next week which will show how the lung met looks and will show any new activity.

I appreciate all the support and help I've received from friends and family. Never give up, never give in (quote from Stan on the MPIP board)!

~KimFromIowa

No News is Good News

2006-07-14T13:47:00.000-05:00

Well, no news is usually good news! Nothing new except I've completed my first 30 days of chemo. I take the chemo pills orally every night, 24/7. It's not fun, but tolerable. Reminds me of the old interferon year from hell. I probably take approx 50 pills a day. Fatigue is my major complaint along with dizzyness and headaches.

My next brain MRI is next Thurs 7/20th. I'll send the films down to MDA for their interpretation. Hopefully nothing new will light up.

I'll post again the end of the month with my MRI results.

Kim

Houston - SRS Round 2

2006-06-30T12:52:00.000-05:00

Well, another successful round down at MDA. The new lesion was zapped like before. Everyone at MDA feels the SRS is doing the job it's intended to do. My MDA onc said I'm one "remarkable" person! I'll take that.

I'm on my 20th day of the chemo. I'm a little embarrassed to admit, that I don't even know the names of all the drugs I'm taking for the side effects. All I know, I have a slight itchy rash, I've gained weight (to be expected with one of the chemo cocktails), I'm bloated and bags under my eyes. I might not look like a Million Bucks......but I'm remarkable *wink*. I have 10 more days to complete cycle 1, then cycle 2 begins. We hope the 2 cycles along with the SRS will show improved results with the brain lesions as well as the one lung met. This fall we'll know more.

All in all, I'm handling the chemo probably better then the average Joe. I'm still recovering from the SRS, headaches are pronounced, but very tolerable with the morpheine patches etc. After I take my chemo in the evening, I'm zonked out and hit the hay early.

Later ~ Kim

Halo Girl does Houston

2006-06-13T11:39:00.000-05:00

Good news again. I'll be traveling back down to Houston for another go with SRS (stereotactic radiosurgery). MDA feels I've shown some progress with the "Halo procedure". Charlie and I leave next Tues, 6/20th and returning 6/24th.

I started my chemo Temodar, Thalidomide & Lomustine Saturday pm. All 3 cocktails can cross the blood brain barrier (which is what we want). So far, not bad at all. A little fatigue, but not sick at all. I've been pro-active with the anti-nausea (Zorfran) med, but I'm thinking it makes me sleepy so I've cut it out during the daytime. I just got done with lunch......and so far AOK!

Kim

Graduation For my Son Kelly

2006-06-05T14:45:00.000-05:00

Hard to believe it's June. Time does fly. I had my last MRI early May and all was stable (which is good). The MRI from last Thurs isn't quite the news we were hoping for. Not terrible news but not great!

I have one new brain met/lesion, the two that were zapped down on MD Anderson have grown and one is showing edema (swollen). Lung met/lesion a little larger. So now what you're all wondering......

The 3 chemo's were ordered today, Temodar, Thalidomide & Lomustine (should have them in by wknd). All 3 are oral medications. I'm overnighting to MD Anderson my films to learn what they have to say. Maybe radiosurgery again, I just don't know yet. The 3 chemos I'm going to take have the capabilities to cross the blood brain barrier (which is what we want) and hoping it will get rid of the one lung met/lession.

The regiment is an 8 week cycle. After 8 wks and stability or shrinkage shows, I can do it again. Many of the wonderful usual side effects... nausau, headaches, constipation and neuropothy. So I'll have in my arsenal........many other side effects drugs. Geeze, my bedroom will look like a fricking pharmacy.

Also, put my Mom on your prayer list. She was just dx'd with Uterine Cancer is scheduled for a hysterectomy (sp) on 6/20th. We feel very confident that the surgery will take care of it and hopefully only Stage I. She's not fretting about so that's good.

Take care all, talk to you soon,
Kim
www.mpip.org

Quick Update

2006-05-11T08:27:00.000-05:00

Good news folks. Had my 4 wk scans (Brain MRI & CT) per MD Anderson's directions and all looks the same (which is good news). Lung met is still the same size. The brain mets look the same. The LINAC (Linear Accelerator - radiation) that I had done in Houston can take up to 4-5 months to show shrinkage of the brain mets/lesions. The monthly Brain MRI is needed to rule out new brain lesions/mets. And nothing new showed up!

Dr. Buroker agrees that waiting until 3-4 wks to start the chemo regiment is fine. I won't feel crappy during Kelly's graduation weekend! We joked about graduations. When Casey graduated I put off the interferon for a week with all of Casey's activities going on and now Kelly's graduation. Geeze...graduations and cancer, so much fun, LOL

Happy Mothers Day!, Kim

Halo Queen

ONLY FOR STRONG EYES

2006-04-15T20:55:00.000-05:00

I find this fasinating. The technology and toys amaze me. This looks worse than it was. A few stings (4) from the novicaine (sp)

MDA Moves Fast

2006-04-12T21:09:00.000-05:00

Again, MD Anderson is an awesome place. Huge, but I've never experienced better care and customer service in my life. I came down here to visit the thought of removing my one and only lung met (since other 2 had "spontanous regression". 1 in a million shot (special the doc said). My new left lung biopsy showed melanoma not lung cancer.

My brain MRI showed 2 brain mets (not good). When brain mets appear, the brain mets are always 1st priority. I just learned this yesterday at 10am (Tues). My onc on the same day set up a consultation appt/ the neuro surgeon and radiology oncologist. Discussed the stereotacic radio surgery (high beam radiation to the mets). I've know about this procedure and is a good protocol if mets are the right size and located in the good areas of "zapping". We all agreed to proceed and when I asked when should be schedule this (thinking early May), the team said tomorrow (today/Wed, 7AM). Wow! I agreed, they wanted one more more intense MRI before today, volumetric MRI...smaller slices than most. Got that done and home at 11pm. Long day to say the least.

So, I had the procedure done today. They need to place this big old halo on. Novicain on the 4 halo drill spots (stinged). Place the halo on and bolted it in to the skull (didn't hurt, just some preasure) . Charlie S witnessed one doc "sharpening the screws"...ooohhh. It really sounds worse than it was. This began at 7am. Had a quick CT done, then waited 4 hrs (I slept), 1pm did the radiation procedure, removed the halo and I was good to go. I have 4 Frankenstein spots on head. 75% chance he got them zapped. Won't know exactly for 6 mnths.

I will have a brain MRI every 4 weeks in DSM, and a CT every 2 mnths sent down to MDA. If stable and/or shrinkage is good. If more mets appear on brain, we can do this procedure again and again.

My lung met takes back seat at this point. Tomorrow (Thurs) will have an appt w/ my onc at MDA full of new questions. Can the lung met still be cut out if brainmets are gone or stable? There a few chemos that can cross the blood brain barrior which MDA is recommending but I'm not sold yet. So this will all be discussed tomorrow. Success rate etc.

We took pictures of the halo, I'll send or post once I get home. We still leave this Friday.

Again, I'm still in awe w/ MDA. More later

Kim

MD Anderson

2006-04-08T08:52:00.000-05:00

MDA is an amazing place. 650 acres, employs 55,000 people. I changed my return flight for Friday 4/14th due to more appt's next week.

I've had a variety of labs done, CT, MRI etc. I've only had one appt with my oncologist. She was a very kind warm lady. She didn't tell me I look like a Million Bucks but did tell I'm "special" as only 1 in a million folks show "spontanous regression". This only can happen with melanoma and kidney cancer. My CT was basically the same as 6 wks ago. Only one met. She also told me the met is in a good location and probably surgery will be the ticket.

Mon am, I'm having a biopsy on this left lung met. My DSM biopsy was on my right lung. She suspects Melanoma or non-small cell lung cancer, but either way, surgery is a strong possibility. She said she'd rather it be lung cancer verses melanoma, lung cancer has a better response rate. Remember non-small cell is different than small cell lung cancer.

Tues I'll see my oncologist with all the results. I than will probably be referred to the thoracic team.

Buroker called me down here as DSM didn't send my other lung biopsy slides. He wasn't very happy about that! But we got it done. My slides arrived yesterday.

If surgery is the way to go, I'm anxious to learn if Dr. Grooters in DSM perhaps can do the surgery. Sure lung surgery is serious but a pretty straight forward routine procedure. Probably a wedge dissection through VATS. Less invasive, not cracking open etc.

Just wanted to quickly update. Today we're heading downtown to a Houston Japan festival. The weather has been warm. We have a pool, so took a dip last night, grocery store walkable.

~Kim in Houston

Six Days and I'm Off on a Jet Plane

2006-03-28T20:14:00.000-06:00

I'm leaving for MDA Mon 4/3rd. Direct flight which is great. We get in to Houston around 6pm. Home bound on 4/11th.

Earlier last week after vacation I followed up with schedule appt person and she was glad I did follow up, as she forgot to schedule all my scans down at MDA. She said I could have them done up here b-4 my appts...but I said...nope, I want them down there, too late of notice for here plus more of hassle to make sure I get them inhand in time etc. She agreed. I followed up 24 hrs later, this person is on vaca until today. So, today I called at 8am, she got it done...BUT ON MONDAY the day I'm not there. Appt person agreed to change and I strongly suggested to have all the scans done the day I arrive BEFORE I talk to anyone! She agreed. so the plan thus far:

4/4
7 AM...check in for labs etc (damn that's early). Chest X-rays, CT prep and CT w/ contrast (ick). Only H2O after 5:30 am. talk about an early coffee. Should be done w/ the CT and have a lunch break (I hope restrooms are near by). 1pm meet w/ one of the clinical oncologists then I'm done for the day.

4/5
10 am appt for MRI. Uneventfull.

That's all I know for now.

I also heard we should try and hit Galveston if we have a free afternoon. Might try.

Oh yea, my tax appt is this Friday.... I do so wish I was organized, LOL

P.S. Say a prayer for my friend J.T., early stage breast cancer, tomorrow lumpectomy (sp). Luv ya JT

Later ~ Kim

HOUSTON.....we've made contact!

2006-03-01T17:13:00.000-06:00

MD Anderson is the winner! I have my first appt 4/4th. I'm to allow 2-5 days of appts. That's pretty standard. Mayo was the same way but we were out of Mayo in 1-2 days. MDA has their own travel dept and sounds like better rates with airlines. They also have the capabilities of changing your return flight if needed without penalties. The motel/hotel rates seem very affordable with shuttle services etc.

Charlie S will be traveling with me. Charlie traveled with me to my 2nd Mayo appt last year as well. Charlie S is also a long time melanoma warrior.

I'm going on vacation 3/10 to Charlotte NC for a few days then heading to the beach! Looking forward to that. I think I get back on Sun the 19th (not looking at a calendar).

Thanks for everyone's support. I've been so fortunate with all my friends and family.

Later guys~ KimFromIowa@hotmail.com

Case Manager Called

2006-02-22T18:48:00.000-06:00

I recieved a very pleasant call today from a case manager through UHC (United HealthCare). She showed me the 18 top knotch cancer facilities that would be considered in-network. Several of the facilities are top rated melanoma centers. I also have a one lifetime kitty of $10,000 that covers any travel (airlines), mileage, lodging etc.

M.D. Anderson, Sloan Kettering, John Hopkins, Stanford, Moffit in Tampa to name just a few. Now the digging comes into play. The case manager will be doing research on RFA (ablation), stereotactic surgery and VATS surgery. Ablation is common on liver mets, but so common on lung mets. I'm still doing homework, but I think the stereotactic procedure is more common on brain mets rather than lung. Both are must less invasive then VATS but I do know if VATS is an option, it's probably a more preferred treatment. VATS would be a 6-7 wks down time when the other two treatments are an outpatient deal.

I had also wished The Carolina's Medical Ctr and/or Duke would have been on the list...but not.

I do have an appt with my onc surgeon here in DSM next Monday. He'll be a good sounding board.

I'll keep you posted!

Hang tough~~ KimFromIowa

Worth The Wait....

2006-02-17T18:53:00.000-06:00

Finally the results of this round of scans are in. It only took 7 days after my scans (usually within 48 hrs even on the MSI (melanoma scene investigation) portable unit. Those were a fun filled seven days :) But the seven days were topped off with exciting events as well...had my annual pap, mam, physical oh yea and a brain MRI. I feel sorry for the folks that freak during that. A MRI is the only scan I can't fall asleep but I do go into a weard trance. Hard to explain. I'm so lucky, scans don't bother me....I'm like "oh goodie, nap time"

Good news from scans. My brain MRI is fine. Looks identical to 2004 ....found the brain and all!

Back to Mel....right met did not light up as hot on the PET (no cancer showing) but the nodule was on the CT (basically inactive, not mel). Not quite sure what that means...but onc reassured me....it's not Mel any longer. The past hot hilar node...didn't light up all... Mel didn't like that area! Left lung did show an uptake (growth) on the one met. The left met is only 2 cm (3/4"). The size is still very small.

This is all good news.

My onc and I both agree to ask some questions regarding removing my left met. I'm going to pursue RFA (radiofrequency ablation), or perhaps surgery. For some reason, again my immune system is kicking in the right gear. As I told my primary doc a few days ago...Mel hates rum and marlboro lights...

First task at hand, my HR person is learning how I get assigned to a "case manager" with UnitedHealthCare so I can learn what medical ctrs are in network depending on various treatments etc.

My thinking cap continues. The www.mpip.org friends always have great success stories to share with wonderful referrals.

Gosh, I'm here posting this instead of having a cocktail(s) at Cooney's...shame on me !!! Go Brian go.

Later with updates...

KimFromIowa

Happy New Year

2006-01-14T07:27:00.000-06:00

Hard to believe 2006 is already here.

I've been receiving some phone calls from friends asking me what my "mel status" is, as my blog hasn't been updated. Well good news, no apparant changes thus far. I'm on the 3 mnth frequent scan miles plan. My next round will be mid February. In the mel world, with Stage IV status 3 mnths intervals is common. I'm not NED (no evidence of disease), but I am "not expecting death" either....just a little humor.

With scans on the horizon, one must think of "what if"? When I say that, I mean what if something else shows up, what if my lung mets have grown etc. With that said, I try and do my homework with treatment options ...if needed. Since there isn't a cure, some folks opt for trials. I know trials are where the cure lies, but I just have a hard time swallowing the status of becoming a human guinee pig. There a few chemo combinations that have helped some. Another tough treatment IL-2 has helped some as well. IL-2 is administered for Melanoma patients and Renal Cell Carcinoma. I recently met a renal cell patient who's kidney cancer has metastized to his lungs. He's having IL-2 administered in Omaha, NE. With that said, I would want to go to major medical facility that administers IL-2 as a common practice. Not sure if Des Moines is an option. High dose IL-2 is give in ICU. One week on, two weeks off, one week on then 4 wks off and repeated. A great website that I found the most helpful and full of answers and support is www.mpip.org (melanoma patients information page).

Without sounding like I'm in denial, I also have to figure out what treatment has little effect on my full time job status. My work (small company) has bent over backwards for me. But we are a small company, no FMLA or short term disability. I'll play this by ear, but it certainly has a factor with my decisions.....if needed.

I've had such great support and looking forward to a healthy 2006 for all! Thanks everyone for your great support!

As Always ~~ KimFromIowa

MSI - Melanoma Scene Investigation

2005-11-09T07:50:00.000-06:00

Wow, life is good!

My 3 mnth update scans showed left lung met stable, right lung met had shrunk and hot hilar node didn't light up at all!

My onc told me what ever I'm doing to keep it up. For some crazy reason, my immune system has kicked in. Who knows why...very rare indeed but I'm doing the happy dance.

Who knows, maybe Mel hates rum and marlboro lights *wink*.

Kim, Stage IV, and still lookin like a Million Bucks!!

Next Scans - 11/4

2005-10-17T11:39:00.000-05:00

October is a great month (besides my birthday)...wow 49 this year! We're having a beautiful Indian Summer. I had NO doctor appts which is always a nice break.

11/4 will be my next round of scans...the overlay PET-CT here at IMMC. I have an appt w/ my clinical onc here in Des Moines on Tues 11/8. Of course, we're hoping for no change and no new surprises.

I still look and feel like a Million bucks, so all is well! I'll post more in November after the jury has deliberated.

~KimFromIowa

2nd Mayo Appt

2005-09-23T08:04:00.000-05:00

Met with the Chair of Thoracic Surgery. He may be great with the knife but they should not let him out to talk to patients. The most arrogant person I've ever met, untouchable, non-communicative.....very unapproachable. Doom and Gloom. He would not touch me w/ surgery as he communicated there is a questionable area behind my breast bone. Then met with the the clinical onc. The ablation doc told him they would not touch me either. The risks for both procedures outweigh the benefits. We agreed since I look and feel like a million bucks, why mess up my immune system. We agreed I'll diligently watch and have frequent scanner miles to compare every 2-3 mnths.

So we get home, my Des Moines onc calls me yesterday and confirms that the questionable area is melanoma on my hilar node (by my heart I think). I asked how do you know that, the Mayo docs didn't confirm. It was written down on Mayo's interpretation from my last CT-PET over lay scan. I pulled my copy and sure enough. We don't know why Mayo didn't confirm. Mel was never said up there.

Again, my plan.......watch and observe for the time being. I'm good with that. My other plan......not visiting Rochester again. My personal experience was not good.

A few mistakes that were made:

1. Clinical onc read the wrong scans on my initial appt
2. Clinical onc told me that he'd be in the appt with the thoracic surgeon........that didn't happen.
3. Clinical onc said a phone consultation would NOT be appropriate as the thoracic surgeon will want to examine me, touch and poke. That didn't happen, he only shook my hand and that was it.
4. Thoracic surgeon was 1 hr and 45 min late.
5. Thoracic surgeon mis quoted the staging chart and contradicted himself twice.
6. Phone rang twice and he answered it during my appt.

The communication was terrible, the professionalism was lacking. The right hand didn't know what the left hand was doing. Again, this is only one person's experience. They are truely not a melanoma clinic.

The 6 P's: Prior Planning Prevents Piss Poor Performance

~KimFromIowa

MRI scheduled (and hopefully the last)

2005-09-01T19:15:00.000-05:00

My silly little MRI is scheduled next Fri, one week from tomorrow (9/9 I think - I'm not looking at a calendar). Anyway, when I get the results I'll overnight the CD up to Rochester. I won't know a thing until the following Wed or Thurs.

It's all good. Waiting sucks but you just have to "work the plan". I'm smiling !!

I'll post after I know more.

~~KimFromIowa, Stage IV, Gold Medalist

PET-CT Reading Finally Read

2005-08-31T11:21:00.000-05:00

My Mayo clinical onc called me and my PET-CT looks good. Only lung involvement!! That's great news. One small questionable node behind my breast bone.......but all in all..looks like surgery is still our strongest option!

I do need a quick MRI, specifically for the T11 level on backbone. This will rule out any melanoma involvement. Just one more precautionary scan (no surprise to me).

I told my clinical onc, beside talking to the thorasic surgeon, I also want to get the appropriate docs involved that perform the RFA & Novalis Shaped Beam Stereotactic Radiosurgery. He agreed.

I feel like a huge weight has been lifted off my shoulders. I think we're heading down the correct path. Everything is sitting much better! I can breathe again.

~~~KimFromIowa

Almost Comical....

2005-08-30T11:27:00.000-05:00

The Mayo clinical onc call me. As he's reading the interpretation of my most recent PET-CT...he's reading the wrong scan. He's looking at a scan back in June & July.

Is this comical or scary? Not sure yet.... but he'll call me back.

He went on and on about 4 uptakes on my liver, wants an ultra sound to rule out Mel. I said, I know the 4 spots are cysts from an ultra sound last year. He then is looking at the dates of these scans and said Oops.. I'll do some further investigation and call you back.

Well, he called me back in just minutes...We found your 8/19th scan but it was sitting in the computer and still needs to be interpretated. I ask, how often does this screw up happen...more than not he tells me. Geeze. He promised to call b-4 the Labor Day Wknd.

I'm sitting here just shaking my head in amazement. I tell ya, Houston is looking better and better.

KimFromIowa, Stage IV, Gold Medalist

Still Waiting and NOT VERY Happy

2005-08-29T17:12:00.000-05:00

Well, Mayo received my overnight package last Wed @ 2pm. I called and verified w/ the clinical onc's secretary. She told me it can take up to 48 hrs by the time "the professional radiology" team reads everything. "Don't be surprised, if you don't get a call until Monday". Ok, I understand.

Well it's Monday, I called at 12:30 pm and talked to the secretary again. Hmmm she said, I'm not sure where everything is at. I asked her to call me either way w/ an update. Well, my clinical onc was out of town until last Wed. "And that's my problem" I said. Please call me either way, absolutely Kim. Gave her both #'s again.

It's 5:30 pm and no call from them. Dang this is frustrating. If I don't get word in the next 24 hrs, I'm having them send back everything and I'll start pursuing Houston. This is ridiculous...maybe not, but I'm not a happy camper!

Sorry to vent but oh well! My boxing gloves are on and ready!

KimFromIowa

Mayo's next appt has changed

2005-08-17T19:11:00.000-05:00

Mayo contacted me today for this Friday's schedule up north. Make a long story short, they want to do PET/CT overlay (different scan) verses what I've been having done ... individual PET's and CT's. Learned I can get that done here in DSM and that is acceptable at Mayo. So, I'll be getting this scan done here then I'll reschedule for Mayo. This needs to be done before we move forward.

You know I love roller-coaster rides, but this one is wearing me out. I've been told to be prepared, but I'm already pooped!

~Kim

Home From Mayo

2005-08-16T18:42:00.000-05:00

Monday's first appt began at 9am w/ the blood work. Next appt not until 2:15 w/ Dr. Ed Creagan (oncologist). We had a delightful day w/ beautiful weather etc. Dr. Creagan is a lovely man. Mary and I both found him very pleasant. Basically, it will take a few days for their "professional radiologist team" (what is in DSM, unprofessional grin) to read all my scans, slides etc that I hand carried up there. We talked about surgery basically. I sounded positive that it is and hopefully very doable. But Dr. Creagan wants me to meet up a Thorasic Surgeon to make the final determination. The different surgery procedures (which I had on my question sheet...good girl) will be further discussed. I'm very interested in the RFA procedure (radiofrequentcy ablation ?). Not invasive but he gave both Mary and I the impression that this procedure has been successful on liver mets but has only been done 9 times w/ lung mets? Didn't learn more yet on that. He did indicate that the VATS surgery would have to performed twice (one lung per surgery). Maybe because of complications w/ a collapsed lung (we don't two of those)? So my new question list begins again. Frontal entry w/ the surgery is a tough recovery time.. but will learn more soon.

Mayo is something else. Such an operation, ran very smooth, found it as pleasant as one would want in this situation.

So the investigation continues. Mayo will be calling me soon to set up the next appt (probably this Thurs or Fri). I'm going to call tomorrow morning and ask about a Friday afternoon appt (would fit better w/ traveling and work schedules).

BTW, Dr. Creagan told me twice....that I look like a Million Bucks! Forgot to check out if he had a wedding band on........grin!

I'll keep you posted with any new developments.

KimFromIowa, Gold Medalist

Family Reunion Next Weekend

2005-08-07T09:10:00.000-05:00

Yikes, it's Sunday and I'm just realizing next weekend is my family reunion. I'm hosting the gang at my home Saturday for a cook out and Sunday we're getting together at the motel where the out of towners are staying. I won't be staying very long on Sunday as I'm heading up to Rochester late morning.

I better get off my fat ass and get some "house work" and "outside chores" done. I'm still in a fog, thank god for meds (grin). Hey, at least I'm delegating some of the "get r done" stuff. J.T., is looking into social security and disability stuff (when and if needed), Lope lined me up with a mutual friend (lawyer) to get my will and living will in order. M.B. (my primary care giver) has agreed to be my trustee when the time comes. I'm still battling my medical insurance company. M.B. will be with me at Mayo, luv ya Mary! My dear friend Charlie has been a great crutch through all of this. I'm hoping he can still take a road trip up here over Labor Day.

I'm so blessed to have such awesome friends and family! I'm ready for the fight!

Mayo Appt Scheduled

2005-08-04T05:36:00.000-05:00

Mayo called me yesterday (Wed) and my consultation appt begins Monday, 8/15. I was told to plan on a 1-3 day visit. But after discussion I'm guessing 1-2 days. I have all my clinicals up to date from DSM. No additional scans or xrays will be needed since all is so current.

The list of "things" I have to hand carry up there...geeze...I might have to rent a trailer (grin).

So today and tomorrow... tons of phone calls to arrange for all my carry on's. I hope my insurance company is ready for me....their ears will be ringing (still fighting them hard)

Kim's Update Page

2005-07-30T10:49:00.000-05:00

Kim's Update Page
I was dx'd w/ Melanoma (Mel from now on) in March, 2003. After two surgeries in April, 2003, I was staged at IIIA (one micro spot on one lymph node involvement). I did one year of interferon from June, 2003 - May, 2004. I was NED (no evidence of disease) for 23 months.

Just recently, I learned that Mel has metastized to my lungs. Now remember, its Melanoma not Lung Cancer. Mel is a crazy beast, he has no rules or reason but in history, Mel tends to like the Brain, Lungs and Liver (and whatever)....ask the warriors.

With this recent development, I've graduated to Stage IV, but a I've had many tests since and many scans and will hopefully visit Mayo in the near future for a consultation appt. I really don't know more than that at this point. My Mayo appt will help us learn if my lung mets are operable. There are many many other trials and treatments available that i will investigate.

As I told many of you, Mel doesn't know who the hell he's trying to date! I'm no easy prey (grin)! I'm ready to pull out all the big guns and whip his ass! As a best friend says "Not Expecting Death"!

I feel so blessed with my strong family and friends and my new friends I've met through the www.mpip.org board. MPIP stands for melanoma patients information page. The strong network of other patients and caregivers has been wonderful!

I will keep you posted as new developments come into play!

Peace and love,
~~~KimFromIowa