Stage IV, feeling upbeat

This topic has 28 replies, 9 voices, and was last updated 12 years, 11 months ago by Gene_S.

Post

- May 19, 2011 at 7:37 pm
- Quote
TracyLee
Participant
Hi all,

Since I often post whiny posts, I thought you'd enjoy a more upbeat post!

Excellent consult with Dr. Sharfman at Johns Hopkins yesterday. I'll begin ipi/Yervoy, probably next week. He was wonderful, I HIGHLY recommend him to anyone in the area of Baltimore (or willing to travel).

Hi all,

Since I often post whiny posts, I thought you'd enjoy a more upbeat post!

Excellent consult with Dr. Sharfman at Johns Hopkins yesterday. I'll begin ipi/Yervoy, probably next week. He was wonderful, I HIGHLY recommend him to anyone in the area of Baltimore (or willing to travel).

As another positive note, my husband is finally "getting it", but in a good way. He's on board, his employers are very very supportive, the kids are being helpful (as much as 20, 18, 15, and 14 can be, in between being normal teens/twentysomethings!). The house is even clean, most of the time. 🙂

While beginning ipi, Dr. Sharfman is testing me for BRAF, also.

Although I was very discouraged Monday due to moving to Stage IV, I greatly appreciate not one but two doctors taking the time on Tuesday to call me and let me know the brain MRI was clear! And even more so, I appreciate the support on this board in your responses.

God is good, all the time. Family, friends (especially here, where you all understand), physicians. I've got my posse, and I'm on the move towards NED…soon!

Viewing 17 reply threads

Replies

- - May 19, 2011 at 7:56 pm
  - Quote
  Vermont_Donna
  Participant
  Yay TracyLee!!!! I am happy about this news. And I do not think any of your posts are whiny. You are real, you express your thoughts, emotions, fears, and hopes and we are here to hear you and support you and if we can guide you. I am so happy for you. I did 4 infusions of Ipi and had a complete response. I had really very minimal side effects, although I have been informed about the many that could happen months or even years down the road. Thats ok, if they happen we will deal with whatever they are. It sure beats having melanoma run amuck in my body!
  
  Glad your hubby "gets it". I have five kids, a bit older than yours, but still it is hard on them especially and I see occasionally more "acting out" or squabbling amongst themselves when they are around or with me. I feel that is their reaction to their fear about their mom. I inform them of the facts and gently reassure them that I am doing everything I can do to take care of myself and this cancer diagnosis.
  
  Hugs,
  
  Vermont_Donna, stage 3a
  - May 19, 2011 at 8:02 pm
    
    Quote
    TracyLee
    Participant
    
    Donna,
    
    Well, I'm thrilled to hear about very minimal side effects! It's helpful re: your kids and squabbling, I'll keep that in mind too!
    
    Looking forward to moving ahead and moving on with my life.
  - May 19, 2011 at 8:02 pm
    
    Quote
    TracyLee
    Participant
    
    Donna,
    
    Well, I'm thrilled to hear about very minimal side effects! It's helpful re: your kids and squabbling, I'll keep that in mind too!
    
    Looking forward to moving ahead and moving on with my life.
- - May 19, 2011 at 7:56 pm
  - Quote
  Vermont_Donna
  Participant
  Yay TracyLee!!!! I am happy about this news. And I do not think any of your posts are whiny. You are real, you express your thoughts, emotions, fears, and hopes and we are here to hear you and support you and if we can guide you. I am so happy for you. I did 4 infusions of Ipi and had a complete response. I had really very minimal side effects, although I have been informed about the many that could happen months or even years down the road. Thats ok, if they happen we will deal with whatever they are. It sure beats having melanoma run amuck in my body!
  
  Glad your hubby "gets it". I have five kids, a bit older than yours, but still it is hard on them especially and I see occasionally more "acting out" or squabbling amongst themselves when they are around or with me. I feel that is their reaction to their fear about their mom. I inform them of the facts and gently reassure them that I am doing everything I can do to take care of myself and this cancer diagnosis.
  
  Hugs,
  
  Vermont_Donna, stage 3a
- - May 19, 2011 at 8:26 pm
  - Quote
  Linny
  Participant
  You are in good hands with Dr. Sharfman over at Hopkins. I especially like his calm demeanor. Are you going to Green Spring Station or to the Outpaitent center in Baltimore for your injections? If you're going into Baltimore and you're feeling up to it, you can always combine your treatment visits with a visit to the Inner Harbor. This is what we've started doing and it always caps the day off in a pleasant manner.
  
  If you're ever in the downtown facility on a Tuesday, we might even run into each other.
- - May 19, 2011 at 8:26 pm
  - Quote
  Linny
  Participant
  You are in good hands with Dr. Sharfman over at Hopkins. I especially like his calm demeanor. Are you going to Green Spring Station or to the Outpaitent center in Baltimore for your injections? If you're going into Baltimore and you're feeling up to it, you can always combine your treatment visits with a visit to the Inner Harbor. This is what we've started doing and it always caps the day off in a pleasant manner.
  
  If you're ever in the downtown facility on a Tuesday, we might even run into each other.
- - May 19, 2011 at 9:25 pm
  - Quote
  premedy
  Participant
  great post! You have such an amazing attitude and approach. What a great influence you will be on this board.
  
  pat
- - May 19, 2011 at 9:25 pm
  - Quote
  premedy
  Participant
  great post! You have such an amazing attitude and approach. What a great influence you will be on this board.
  
  pat
- - May 19, 2011 at 9:39 pm
  - Quote
  nicoli
  Participant
  TracyLee, put on your Wonder Woman suit and FIGHT LIKE A GIRL!
  
  Nicki, Stage,3b, scalp
- - May 19, 2011 at 9:39 pm
  - Quote
  nicoli
  Participant
  TracyLee, put on your Wonder Woman suit and FIGHT LIKE A GIRL!
  
  Nicki, Stage,3b, scalp
- - May 19, 2011 at 9:42 pm
  - Quote
  Carol Taylor
  Participant
  OOOOOOO! Part of Tracy's posse! how cool is this!
  
  I am so gladthings are looking up for you and everyone's getting it, even your progeny posse. Kids DO have their way of being supportive when Mom's down. Kudos for yours.
  
  You can do this! Make melanoma sorry it ever messed with you Girl!
  
  Continued prayers for you!
  
  Lord, in Your mercy continue to make a way for Tracy and thank you for waking up her family. Introduce her to NED and may they become fast friends!. Amen.
  
  Grace and peace,
  
  Carol
- - May 19, 2011 at 9:42 pm
  - Quote
  Carol Taylor
  Participant
  OOOOOOO! Part of Tracy's posse! how cool is this!
  
  I am so gladthings are looking up for you and everyone's getting it, even your progeny posse. Kids DO have their way of being supportive when Mom's down. Kudos for yours.
  
  You can do this! Make melanoma sorry it ever messed with you Girl!
  
  Continued prayers for you!
  
  Lord, in Your mercy continue to make a way for Tracy and thank you for waking up her family. Introduce her to NED and may they become fast friends!. Amen.
  
  Grace and peace,
  
  Carol
- - May 19, 2011 at 10:41 pm
  - Quote
  shellebrownies
  Participant
  TracyLee,
  
  Way to put the gloves on and keep on fighting! There are so many promising treatments coming up the pike for Stage IV these days that there is no need to panic. I'm glad to hear that your doctor is being proactive and getting you on a treatment right away while waiting for the BRAF results (which unfortunately can take up to 3 weeks of processing…).
  
  Keep smiling!
  
  Michelle, wife of Don, Stage IV
  
  (and part of TracyLee's posse!)
- - May 19, 2011 at 10:41 pm
  - Quote
  shellebrownies
  Participant
  TracyLee,
  
  Way to put the gloves on and keep on fighting! There are so many promising treatments coming up the pike for Stage IV these days that there is no need to panic. I'm glad to hear that your doctor is being proactive and getting you on a treatment right away while waiting for the BRAF results (which unfortunately can take up to 3 weeks of processing…).
  
  Keep smiling!
  
  Michelle, wife of Don, Stage IV
  
  (and part of TracyLee's posse!)
- - May 19, 2011 at 11:00 pm
  - Quote
  nicoli
  Participant
  I wanna be in TracyLee's posse. Do we get to wear colors? and bandanas? My son has a caddy on 24 inch rims I could borrow when we swag.
  
  Nicki, Stage 3b
  - May 19, 2011 at 11:10 pm
    
    Quote
    Carol Taylor
    Participant
    
    Nicki,
    
    We're sooooooooooo far ahead of the game! We've GOT colors! Black! Heck, we got a logo A Beast! How bad @#($*(% is THAT?! We bad!
    
    If Rich is paying attention, he can write us a thumping tune with a beat we can blast.
    
    How old is sonny? Is Mommy going to embarass the boy? I know, I know, it's a perk of mommy-hood..wow, we have a hood! This just gets better & better! My 20 year old would be mortified if he knew I was in a posse. Just the thought of me using the word…well, it would be too much.
    
    Oh well. He's gotten over stuff before. This will just be something else to deal with.
    
    Posse Power!
    
    Grace and peace,
    
    Carol
  - May 20, 2011 at 2:36 am
    
    Quote
    nicoli
    Participant
    
    My son is almost 20 and he thinks I am weird! Little does he know.
    
    Posse, colors, rims, a hood (this site). WE MOST DEFINITELY BAD.
    
    Nicki
  - May 20, 2011 at 11:29 am
    
    Quote
    Carol Taylor
    Participant
    
    Nicki, I'm a preacher! Mainline at that! Just the thought gives my 20, almost 21, year old son hives! Let's just say he's very much a person of his generation when it comes to anything to do with religion. One his good days, he's "proud" because I work to keep morons in line who need religion to behave.
    
    Enough of that. Where's our fearless leader? I noticed we're getting her posse and not a peep from her. Yoo-hoo, Tracy!
    
    I had an idea. You know we're fighting the beast. And you're all ninja, we could have girl ninjas kicking the mess out of the beast for our "who we are" logo or whatever the proper terminology is.
    
    Grace and peace,
    
    Carol
  - May 20, 2011 at 11:29 am
    
    Quote
    Carol Taylor
    Participant
    
    Nicki, I'm a preacher! Mainline at that! Just the thought gives my 20, almost 21, year old son hives! Let's just say he's very much a person of his generation when it comes to anything to do with religion. One his good days, he's "proud" because I work to keep morons in line who need religion to behave.
    
    Enough of that. Where's our fearless leader? I noticed we're getting her posse and not a peep from her. Yoo-hoo, Tracy!
    
    I had an idea. You know we're fighting the beast. And you're all ninja, we could have girl ninjas kicking the mess out of the beast for our "who we are" logo or whatever the proper terminology is.
    
    Grace and peace,
    
    Carol
  - May 20, 2011 at 2:36 am
    
    Quote
    nicoli
    Participant
    
    My son is almost 20 and he thinks I am weird! Little does he know.
    
    Posse, colors, rims, a hood (this site). WE MOST DEFINITELY BAD.
    
    Nicki
  - May 20, 2011 at 3:37 pm
    
    Quote
    Linny
    Participant
    
    Your note reminded me of a T-shirt that someone had seen in a shop that sells goodies to breast (and other) cancer patients. What was printed on the front of the T-shirt was "Cancer, you've found the wrong bitch!". What a great shirt!
  - May 20, 2011 at 3:37 pm
    
    Quote
    Linny
    Participant
    
    Your note reminded me of a T-shirt that someone had seen in a shop that sells goodies to breast (and other) cancer patients. What was printed on the front of the T-shirt was "Cancer, you've found the wrong bitch!". What a great shirt!
  - May 19, 2011 at 11:10 pm
    
    Quote
    Carol Taylor
    Participant
    
    Nicki,
    
    We're sooooooooooo far ahead of the game! We've GOT colors! Black! Heck, we got a logo A Beast! How bad @#($*(% is THAT?! We bad!
    
    If Rich is paying attention, he can write us a thumping tune with a beat we can blast.
    
    How old is sonny? Is Mommy going to embarass the boy? I know, I know, it's a perk of mommy-hood..wow, we have a hood! This just gets better & better! My 20 year old would be mortified if he knew I was in a posse. Just the thought of me using the word…well, it would be too much.
    
    Oh well. He's gotten over stuff before. This will just be something else to deal with.
    
    Posse Power!
    
    Grace and peace,
    
    Carol
- - May 19, 2011 at 11:00 pm
  - Quote
  nicoli
  Participant
  I wanna be in TracyLee's posse. Do we get to wear colors? and bandanas? My son has a caddy on 24 inch rims I could borrow when we swag.
  
  Nicki, Stage 3b
- - May 20, 2011 at 10:40 am
  - Quote
  FormerCaregiver
  Participant
  That's very encouraging news! Things are looking much more positive now, especially
  with your husband finally understanding your situation.
  
  You remain in my prayers.
  
  Frank from Australia
- - May 20, 2011 at 10:40 am
  - Quote
  FormerCaregiver
  Participant
  That's very encouraging news! Things are looking much more positive now, especially
  with your husband finally understanding your situation.
  
  You remain in my prayers.
  
  Frank from Australia
- - May 21, 2011 at 4:16 am
  - Quote
  Gene_S
  Participant
  Hi TracyLee,
  
  It's time for a little entertainment… see if you can obtain a copy of The Next Karate Kid , this movie is a really feel good, kick butt , Go Girl Go movie, the same as your doing with the beast !
  
  Best wishes,
  
  Gene
- - May 21, 2011 at 4:16 am
  - Quote
  Gene_S
  Participant
  Hi TracyLee,
  
  It's time for a little entertainment… see if you can obtain a copy of The Next Karate Kid , this movie is a really feel good, kick butt , Go Girl Go movie, the same as your doing with the beast !
  
  Best wishes,
  
  Gene