In the midst of Cyberknife......
I am sitting here in my hotel room ... Bored... So I thought I would update you guys on me. A few months back my CEA started rising. It was a very slow rise... In small amounts.... But then it finally got over 10. Once your CEA gets over 10 you can pretty much rule out anything else it can be except recurrence. They did 3 PET/CT during those months but nothing was lighting up. Nothing was showing on any scans. Onc said it could take months before anything showed up on scans and since CEA has always been an excellent tool for me I should use it. He started me on Vectibix right away and my rad. Onc was not happy about this as his thinking was " what the hell you treating" a number?? YES.... I was and did and now glad I did as the tumorS finally showed their face. 1 in left lung and 1 in right lung. We immediately biopsied left lung and it was positive for Mcrc so we did Cyberknife on that sucker and it's gone. Right before Cyberknife my CEA had got a little above 25. After Cyberknife it got to about 9. BUT...we still had to deal with the right lung. I had that biopsied a few weeks ago and it came back NO cancer cells found. Hummmmm.... That kinda stumped me. BUT.... Since CEA was still elevated I know my body ....and it was telling me the crap WAS in there. So I opted to go ahead and do the Cyberknife on the right area too. The fudicials had already been placed when I had the biopsy so here I am.... In st. Louis...in a hotel...all by my lonesome. I had round 1 yesterday that lasted 3 hours....off today...round 2 Thursday and round 3 Friday. Both of those days will be 2 hour sessions. This procedure is taking a little more time than my previous 2. Doc says this mass is close to the lung lining and they have to fry it at a slower rate so they don't burn that lining cause that smarts a wee bit. Oooook.....whatever.
I have a question about vectibix. Maybe someone knows???? Does vectibix kill cancer cells once they are formed or is that not how it is designed to work? Does it just stop cancer cells from forming so they can't grow...is that how it works? I'm just trying to decide if the crap is working one way or the other for me but need to know HOW it's suppose to work. The 2 tumorS (now 1) I have in my body had evidently been growing since before I started vectibix but nothing new (so far) has started growing since I started the vectibix. I just need someone to explain to me EXACTLY how vectibix does it's business so I know what to look for as far as proof of working. Thank you!
Anyway, that's the update on me. I am feeling very good. Since I stopped chemo several months back and am just doing the vectibix my hair started growing back in. It's about this long now ________________. YAY! My blood counts have all been perfect and my poopin is ..dare I say...normal???? LOL. I got all my top teeth pulled out because chemo rotted them under the crowns and now I have top dentures that I am trying to get use to. They look really nice but when I take them out I look about 150 years old. It's scary....really! LoL. I guess my only complaint is my hands and feet keep going to sleep. Feels like needles in them and my feet go to sleep and I can't walk till I get them woke up. It happens when I sit on the pot. In that amount of time my feet fall asleep and then I can't get off the pot. I gotta rub them and get the blood moving and bam..then they ok. I don't know. That's pretty strange. I get cramps and Charlie horses in my feet and hands too. Sometimes it happens when I am driving and I have a hell of a time getting pulled over. I have to stop my car and literally get out and put direct pressure down on my foot to stop it. My fingers will start going in strange directions like that too...like they are possessed or something. Why do I have these strange things happening??? The ONLY supplement I am taking now is D3. I take 20000 iu daily. Potassium levels always fine so I know that not a prob....any ideas on what's going on with my hands and feet??
Well, all in all I am feeling pretty blessed. HAPPY NEW YEAR to you all.... : )
JENNIE
Comments
-
I Called the Fire Dept.....
......'cause you got too many fires burnin' out of of control:)
LOL!
Bored? With a new iPad? Only you, Jennie...LOL!
I remember you sayin' you were going to be getting treatments this last week...glad they are going well.....I'm actually doing a lil' surgery myself on the 30th, so I'll keep you on my mind - at least until the Propofol catches up to me, then it's 'nighty-night.'
LOL!
Vectibix is on the menu next for me, but I haven't ordered it, so I don't know what to tell you here on this...
Not sure about the numbness either...that is strange. I have parts of me that go to sleep as well.....feet and fingers...
You must be proud of those new chompers - and I bet you lost alot of weight from that procedure - that's because they lightened up your wallet, LOL!
I can only imagine what this new sensation must feel like and what it would be like to get used to that. But, I'm glad that you are out of pain and feelin' better.
Never one for decorum, I've got a joke I could tell you about since I've now got this visual of you removing your 'uppers.'...you see where I'm going with this, Jen....but I'll be good and hold my tongue, LOL!
I'll catch you on the flip-flop:)
-Craig0 -
Oh craigers!!Sundanceh said:I Called the Fire Dept.....
......'cause you got too many fires burnin' out of of control:)
LOL!
Bored? With a new iPad? Only you, Jennie...LOL!
I remember you sayin' you were going to be getting treatments this last week...glad they are going well.....I'm actually doing a lil' surgery myself on the 30th, so I'll keep you on my mind - at least until the Propofol catches up to me, then it's 'nighty-night.'
LOL!
Vectibix is on the menu next for me, but I haven't ordered it, so I don't know what to tell you here on this...
Not sure about the numbness either...that is strange. I have parts of me that go to sleep as well.....feet and fingers...
You must be proud of those new chompers - and I bet you lost alot of weight from that procedure - that's because they lightened up your wallet, LOL!
I can only imagine what this new sensation must feel like and what it would be like to get used to that. But, I'm glad that you are out of pain and feelin' better.
Never one for decorum, I've got a joke I could tell you about since I've now got this visual of you removing your 'uppers.'...you see where I'm going with this, Jen....but I'll be good and hold my tongue, LOL!
I'll catch you on the flip-flop:)
-Craig
Yes..I know where u are going with that! Just let me fill you in on how happy my husband is with my new teeth......or should I say NOT my teeth.......you know where I am going with that right???????? Yes, I dropped damn near 20 pounds and yes...my wallet took a $5000 hit. Insurance won't pay for that since there is no PROOF that chemo causes tooth rot...but I bet every chemo patient has a tooth story!
What surgery are u getting done? I don't remember you mentioning any surgery.
JEN0 -
Had the sameidlehunters said:Oh craigers!!
Yes..I know where u are going with that! Just let me fill you in on how happy my husband is with my new teeth......or should I say NOT my teeth.......you know where I am going with that right???????? Yes, I dropped damn near 20 pounds and yes...my wallet took a $5000 hit. Insurance won't pay for that since there is no PROOF that chemo causes tooth rot...but I bet every chemo patient has a tooth story!
What surgery are u getting done? I don't remember you mentioning any surgery.
JEN
My feet would go to sleep sitting on the commode for too long, but i could tell it was due to the pressure on my legs causing circulation to being cut off, or pressure on a nerve. It would happen in a car, too, until I finally bought a car that fit "my body", not a man's body. I can't drive an SUV, or large cars where the end of the seat hits at the back of my knees, causing the circulation problem.
Now, the hands, are a different story...don't know why those would go numb, but it makes sense that it would be something like a pinched nerve. I'm sort of neutral on chiro care, never been to one, but they help some people. If it were me, I would try accupuncture. I'd tell them all the different ailments. Had some help with that for a numb and stiff neck....worked very well.
As far as the cramps, feet and hands....I had that on Folfox, but don't know why that would be doing that now. Again, anything musculoskeletal, I'd ask an accupuncturist. I assume like with everything, there are good ones, and not so good ones.
Vectibix works the same as Erbitux which many are using. No experience myself.
Best wishes with the cyberknife. Glad you are getting that last one treated.0 -
vectibix
Hi Jennie,
Vectibix is an anti-EGFR drug, a biologic (targeted therapy) so it's supposed to interfere with cancer cell growth and the spread of cancer. Consequently, it should have fewer side effects than the chemo.
I had 3 rounds of this and side effects (mainly a rash) were quite manageable. It didn't work for me because we found out later that I have an nRAS mutation. Vectibix and erbitux do not usually work if there is a kRAS, BRAF or nRAS mutation.
I'm glad that you had the option of cyberknife. We don't where I live
Tricia0 -
Procedure
Glad that everything seems to be coming along well for you. Wish you had some company - it stinks being by yourself and going through that with no one there. Santa was good to you this year with an Ipad - awesome. Hope the rest of your treatment goes well.
Kim0 -
I am glad you are taking
I am glad you are taking care of things but not glad that you are there alone. I have done a few surgeries alone and it is not for me. I pray all goes well for you and you slay every cancer cell! GOD's blessings
Brenda0 -
I am glad you are taking
I am glad you are taking care of things but not glad that you are there alone. I have done a few surgeries alone and it is not for me. I pray all goes well for you and you slay every cancer cell! GOD's blessings
Brenda0 -
I am glad you are taking
I am glad you are taking care of things but not glad that you are there alone. I have done a few surgeries alone and it is not for me. I pray all goes well for you and you slay every cancer cell! GOD's blessings
Brenda0 -
I am glad you are taking
I am glad you are taking care of things but not glad that you are there alone. I have done a few surgeries alone and it is not for me. I pray all goes well for you and you slay every cancer cell! GOD's blessings
Brenda0 -
Sounds like a good prognosis
Sounds like a good prognosis for your situation. You are a fighter and making the best of being alone in that hotel room. I don't know you but I've read many of your posts and just want you to know I'm thinking of you.
Glad this will be behind you soon.
Laura0 -
Hey Janie...janie1 said:Had the same
My feet would go to sleep sitting on the commode for too long, but i could tell it was due to the pressure on my legs causing circulation to being cut off, or pressure on a nerve. It would happen in a car, too, until I finally bought a car that fit "my body", not a man's body. I can't drive an SUV, or large cars where the end of the seat hits at the back of my knees, causing the circulation problem.
Now, the hands, are a different story...don't know why those would go numb, but it makes sense that it would be something like a pinched nerve. I'm sort of neutral on chiro care, never been to one, but they help some people. If it were me, I would try accupuncture. I'd tell them all the different ailments. Had some help with that for a numb and stiff neck....worked very well.
As far as the cramps, feet and hands....I had that on Folfox, but don't know why that would be doing that now. Again, anything musculoskeletal, I'd ask an accupuncturist. I assume like with everything, there are good ones, and not so good ones.
Vectibix works the same as Erbitux which many are using. No experience myself.
Best wishes with the cyberknife. Glad you are getting that last one treated.
I think I will look into an accupuncturist. Thanks for the idea. I have been researching Vectibix all evening and now know EXACTLY how it works and what to expect. Thanks for the well wishes. You take care
Jennie0 -
Hey Tricia...th_in_canada said:vectibix
Hi Jennie,
Vectibix is an anti-EGFR drug, a biologic (targeted therapy) so it's supposed to interfere with cancer cell growth and the spread of cancer. Consequently, it should have fewer side effects than the chemo.
I had 3 rounds of this and side effects (mainly a rash) were quite manageable. It didn't work for me because we found out later that I have an nRAS mutation. Vectibix and erbitux do not usually work if there is a kRAS, BRAF or nRAS mutation.
I'm glad that you had the option of cyberknife. We don't where I live
Tricia
Thanks for the info. I did find out quite a bit tonite on vectibix. You take care
Jennie0 -
Kim..TC..and Brenda....Brenda Bricco said:I am glad you are taking
I am glad you are taking care of things but not glad that you are there alone. I have done a few surgeries alone and it is not for me. I pray all goes well for you and you slay every cancer cell! GOD's blessings
Brenda
Thanks for all your well wishes! I really don't mind being here alone. This is my first time being a big girl with no one holding my hand...... I gotta say... It's not been bad at all. After all the Christmas commotion this is like a little vacation. This Hilton I am staying at is pretty cool and I gotta tell ya...... A girl sure could get use to this room service stuff....and this bed...wow...I wanna take it home!!! So I am getting lots of R&R..... And good food. Y'all take care
Jennie0 -
Hey Laura.......lauragb said:Sounds like a good prognosis
Sounds like a good prognosis for your situation. You are a fighter and making the best of being alone in that hotel room. I don't know you but I've read many of your posts and just want you to know I'm thinking of you.
Glad this will be behind you soon.
Laura
How the heck are you? I don't think we have ever spoke but it's nice to meet you. I too have followed your posts. Thanks for thinking of me and I hope to be chatting in the future. You take care
Jennie0 -
Awww
Sweetie wish we were closer and we could at least have dinner together (oh wait I can't eat out cuz I'll have an accident), but we could have a pop or coffee. Oh just wishing I was there with you. Glad you are happy on your own and the hotel sounds awesome. Get some great room service. Glass of wine, escargot, steak/fish. Yummy get the great stuff. Hugs to you kiddo.
Kim0 -
Dear Jennie
Glad to hear you are making the best of being pampered at the hotel while doing the big girl stint with the Cyberknife.
You mention that your potassium levels are good. How about calcium and magnesium? I understand their low levels too can cause the cramping. Also lots of water is recommended for hydration.
Wishing you all good things in the New Year.
Hugs,
Marie who loves kitties0
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