Surgery cancled, tumors multiplied

Posted By
MelanomaMike
10/11/2017 4:51pm
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Replies: 20

Hi guys, been awhile since iv been on, hope everyone is well. My Thoractic surgeon just called me, we had a surgery date of the 23rd {10/23/17} and he just called to say my CT scan i just had revealed my original tumor on my right lung {lower lobe} has grown to 2.5cm and a few more has sprouted up {smaller ones} so, he feels surgery isnt a good approach right now. Hes ordering a biopsy into my "left" lung where there is an easy access much smaller tumor {which was also there originally}. After my surgery in my left shin {june 29th 2017} those scan's  that where performed revealled my lungs activity one tumor on the right {larger of the two} and one little one on letft lung. It took me some time to get my head around either Chemo/Imm therapy or surgery, and after a month i decided to do the surgery & now its cancelled due to its "multification" of more tumors {another words its aggressive}. i mean wow! just in 2 months or less  its spreading fast? goes to show its urgency. My surgeon assured me if i had agreed to do the surgey a month ago, it would have been a waste of time accept a true diagnosis wich he already knows its melanoma by its looks {plus ive had 6 prior surgeries for Mel tumor removal.So, now chemo or Immunal  therapies are my only option, i hear Yervoy is good? and its not harsh on the body?and can it be done as an "outpatient" setting? any info or questions please write me, it just got even more serious for me today with his phone call, or, i may have been in denial thus far...im scared now, im not gunna lie...Take care brothers & sisters, Mike Pruitt

Anonymous - (10/11/2017 - 6:44pm)

Sorry to hear about this Mike and understandably you are scared.But please know that the newest treatments including the checkpoint inhibitors and combinations with them are now avilable for stage IV patients; unlike 6-7 years ago when there was very little to be offered to metastatic melanoma patients.Have your tumors been genetically tested?If not they should meanwhile Ipi/Nivo or Keytruda are possible lines of treatment for you,besides traditional chemo as IL2.Are you seeing melanoma specialist?If not you should definately see melanoma specialist at one of the melanoma centers of excellence like MD Anderson, Sloane Kettering,Dana Farber,etc I think they are the ones that can come up with the best treatment option fo you.Hang in there and please contact melanoma center of excellence soon if you have not done so already.Best wishes and prayers your way,

Thank you so, so much i really need support right now and you all have been awesome thanks...i should be doing the biopsy into my left lungs "easy access" tumor shortly, tomarrow they will call for scheduling that will hopefully tell the story more clearly and not "assume",its Mel....Mike

I put this primer of melanoma treatments together:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Hope it helps.  Hang in there.  Ask if you have additional questions.  I wish you well.  Celeste

Wow! Yer so smart! Thank you for this write-up of your findings through your journey during treatment, im still a student of sorts with my Melanoma bug and now that its in my lungs (as of a few months ago) it got real "REAL" now, so real that my surgery was cancelled today 10/11/17 (cuz more tumors sprouted since my last scan 2 months ago i had another CT 4 days ago), originally there was only 1 in each lung, the right being the larger of the two).A biopsy is being ordered and treatment is inevitable. I was first diag in 2008 (stage 3b) have had 6 surgeries all contained in left leg (including the Lymphnode groin area, drain bag/hose etc.). I average every 2yrs & it comes back itvseems. Thank again Celeste and to a gent named Brian here at MRF who co-signed your worthyness...love/respect Mike Pruitt

Sorry Mike.  A lot of us know how it feels to get that kind of info.  It sucks.  Hang in there.  There is reason to be hopeful.  Read through Celeste's stuff.  May take a 2 or 3 reads before it starts sinking in.

In reference to your "Yervoy good?"  Yes Yervoy is good, Opdivo or Keytruda is better with less side effects.  Yervoy combined with Opdivo is even better but with more side effects.  

Take care, 

Brian

Thanks Brian, im gunna check out Celeste's link she put together now. Ya it sucks, with all my other last 6 surgeries (since 2008's 1st diag) those where all a piece a cake cuz they where all in my left leg (one major in lympnode area of groin, drain bag whole 9 yards) but now this? Im trying to get into fight mode and move aside this dark feeling and its hard thank God you guys are around...Mike..

Hi Mike! Thats the spirit brother, and also how I am handling my approach to all of this. Its too easy and normal to let our thinking and feeling become dark, I try not to spend much time there. I agree with one of the other posters about making sure you get linked up with a center that specializes in Mel and that will also give you access to unique trials (if applicable). You are already a Warrior because you have been putting the whoop ass on this since 2008, now its time to finish this bastard off for good assuming the biopsy tells you thats what needs to happen. There are lots of us here for you man.

Tex

Tex

Hell ya! Thats right brother, im trying to get out of its darkness, imending "doom" feeling, ya its still fresh (yesterday was the phone call i got about my results from the CT i just had on Monday) today i should get scheduled for the biopsy. Step by step day by day iv been telling myself, thank God for you folks & my loving wife...thanks Tex, (you from Texas? Have 2 brothers in Laredo...

Hey Mike,

Yessir, deep in the heart of Central Texas! The Keytruda is outpatient brother, in fact there is so little concern about it that they completed my infusion and released me right away, took about 30-45 minutes and I was free to go!

Tex

Tex

Oh hell yah! i havnt even seen my Oncoligist yet & i already feel better, im gunna tell her i want Keytruda!  i know Kaiser supplies it cuz i read their Med list they carry. So far here at MRF, iv only heard good things about it so why not "TRUST" my new found brothers & sisters who take the stuff!!? its On like Vietnam!

Ah shoot Brian, i forgot to ask, is Opdivo, Keytruda and Yervoy given as an "outpatient" setting? I fear "inpatient". If im gunna be "ill" i want to be home so i can keep busy with my woodworking and or taking walks etc....Mike..

All outpatient, easy to tolerate, just have to be aware of the side effects that are possible so you can bring them up to your oncologist right away to treat them, but most of us on treatment work full time and continue most of our regular activities :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

Hi Jenn, thank you for your much needed assurance! my only "fear" now is, the Kaiser i go to thats closest to me is not as equiped to provide Chemo/Imm therapies as the Riverside one 100 miles away, and thats the one i see from time to time  since 2008's first diagnosis because their more specialized in Melanoma. If my local Kaiser doesnt have it in stock, cant they order it from Riverside? i couldnt stand the drive every 5 minutes to do therapy, we have one car & its old!  let me re-word that, my local KP does do therapy but i guess what im trying to say is, Is Key/Opdivo-Yervoy administered the same way as anyother treatment? a few months back my local Oncoligist was talkin Interferon at my local KP so i know they can adm that {wich im NOT gunna do thanks to you guys here at MRF}...thanks for your information it helps!

I was at Kaiser when my whole journey started and I started on Yervoy there, had a couple infusions at Kaiser before switching insurance, I was the first patient ever to get it at my local Kaiser. They should be able to order it if they have an infusion center/oncology there at your Kaiser. It is just IV infusion, same as most chemo drugs, and is very uneventful in terms of the actual infusion itself. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

Anti-PD-1 (no matter if it is Nivolumab [Opdivo] or Pembrolizumab [Keytruda]) is delivered by an IV over about 30 minutes...as is ipi [Yervoy].  Some folks have a port put in if they are a hard stick....but most of us...go to the infusion center, have blood drawn if needed, IV started....infusion done...go home....usually on an every 2-3 week schedule.  All of this is in the outpatient setting.  I break it down in the link I gave you.  Yervoy has about a 15% response rate.  Anti-PD-1 products about a 40% response rate.  Side effects with all three of these immunotherapy products are the same range of things....rash, fatigue, joint aches being most common. Ipi causes more side effects than anti-PD-1.  The ipi/nivo combo gains about a 50% response rate...but has more side effects...though ipi is the main culprit there...with lots of folks having to drop off the ipi portion and carry on with nivo alone.  Hope that helps.  celeste

Celeste you freakin rock! Big hug to you, i imagine youve helped quite a bit a folks through these tough times, as you do me. A lot of good support here from others as well, im "new" to extent that its gettin serious now after 9 years, all my last treatments where surgeries, 6 diff times about 2 years apart (all in left leg) and now its in lungs. Im ready though, my wifes by my side, & thank God for her, Hillary is her name...thanks again Celeste and i vow to post what my team is doing and let you all know how i feel as i start my treatment, its also good for our new members who are newly diagnosed..its important...love ya all...Mike

Hey Mike! Just checking in man, I hope you are enjoying your weekend and relaxing!

Tex

Ah Shoot! sorry i didnt check in this weekend, time is kinda "flying" by for me, i believe im "pushing" the clock as much as possible to get to the 26th for that darn CT guided biopsy lol..i did "try" to have a relaxing weekend, i do woodworking projects nowadays, a few years now, not the hand chisle way but the high speed tool called a Dremel, have it hanging over me up above with its attatcment cable, i do lil choppers, Military stuff mainly,  im doing an 18in US Navy insignia plaque on consignment for  my wifes uncle {my uncle to i guess} He offered {money is tight} so im racing to get er done by Nov 10th when their out from NewYork. Thank God for wood bro, i would go nuts without it lol!how can i send you a pic or two? my email is armedfalcon12@gmail.com Thanks for writing, how you doin? Mike...

Hi Mike,

Sorry I'm replying a little late but I've done the Yervoy/Opdivo combo (only two infusions) and it worked well on almost every tumor.  It wasn't exactly a walk in the park but I think much milder than some of the older treatment options.  It was two infusions with a wait between the first and the second and then I was home.  Side effects for me were fatigue and mild fevers after the first treatment and then more of the same after the second.  Then hepatitis which was controlled by steroids.  Hopefully you can find some peace during this stressful time.  I wish you good luck with treatment.  

Good wishes to you,

Jennifer

Hi Jennifer, thanks for writing, i need all the help, opinions i can get from the folks who are or had, taking treatment! you mentioned in yer note that when you where given yer Yer/Opd was it "OutPatient? you sounded as if you may have been in the hospital during your treatment? reason im asking, thats one of my "fears" i guess, and ya i know it shouldnt, our life is important! My goal is to be treated {infused} and let go! let me deal with "whatever" at home, im close to my Kaiser if anything should erupt. Im seeing a great deal of great statistics on Keytruda for Melanoma, and even here at MRF backs it. I hope i can "tell them" what treatment i want, cuz Keytruda sounds promising You spoke of Hepatitis? i unfortunetly have Hep C as well, & know that it may be an issue? did you have it also "before" Mel? take good care & please repond, i love getting messages as well as messaging & putting out good vibes to the new folks who pop up :}...Mike