Third time around the block....BUT --- Update...
Comments
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Oh Don!!donfoo said:SIGH!
Just saw this P. So sorry to hear about another cancer yet trilled you are able to be treated using the newest and very promising therapies. You're a veteran bus rider so you know how the journey goes and have greatest hopes it ends in the same place - NED. Best wishes my dear friend. FYI - I'm searching for an RV to go visit places and people. You're on the route. See you soon. Don
I hope you find your RV and come for a visit....it is truly beautiful up here in summer and fall....it would be wonderful to see you again!!
p
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LOL....yes....a charter bus withLaralyn said:On the bus again...
Phrannie and I have been on the bus at the same time... for three times in a row now! It's starting to feel like some kind of special charter bus at this point. ;-)
The strides forward being made in cancer treatments right now are pretty amazing. I'll be right beside you on the bus, holding your hand!
two filled seats!! LOL We go around and around the same block.....like we had tickets to get on, but nobody will open the doors and let us off!!!
p
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Please keep us updated!
Phrannie, so sorry to read you're waging another battle. You have been so upbeat and encouraging to all of us here. Your posts were very helpful to me last Summer and Fall when I went through diagnosis, surgery, rads, and chemo. I'm glad that you've qualified for Keytruda and wish you the very best of luck with your treatment. Please check back in and let us know how things are going. Prayers coming your way!
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Keytruda
Been meandering on this board for the last nine years when I went through the God-Awful treatments thrown at me due to HPV Tonsil Cancer. For the last two years, I've been fighting Melanoma on the right side of my head. Last year, after 14 hours of surgery, they took my right ear....right ear canal....and Mastoid bone that was behind that ear. Long story....short, the Melanoma has returned due to not being able to undergo radiation because of all the rads I received 9 years ago. Enter Keytruda. Hopefully my best option to get rid of all this junk. Infusion every 3 weeks (Mondays) for the next two years.
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I had my first infusion thisCajunEagle said:Keytruda
Been meandering on this board for the last nine years when I went through the God-Awful treatments thrown at me due to HPV Tonsil Cancer. For the last two years, I've been fighting Melanoma on the right side of my head. Last year, after 14 hours of surgery, they took my right ear....right ear canal....and Mastoid bone that was behind that ear. Long story....short, the Melanoma has returned due to not being able to undergo radiation because of all the rads I received 9 years ago. Enter Keytruda. Hopefully my best option to get rid of all this junk. Infusion every 3 weeks (Mondays) for the next two years.
morning, CE....wow, such a difference from the last chemo rodeo. I was there a total of two hours.....first 1/2 hour spent touring the facility (I have the same Onc as last time, but the infusion center is new)....the next 40 minutes spent getting infused....and the rest of the time they kept me to watch me to make sure no reaction. No pre-meds, no benedryl, no nothing. Next infusion should be about an hour total.
I feel absolutely no different tonight than I did last night. I'm having not a single iota of side effects (makes me wonder if they really gave me something
.) Sorry, about the melanoma...it's not fair to end up with two different kinds of cancer in the head...that sucks!!!....isn't Keytruda what President Carter got for melanoma?
p
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Phrannie, I am so sorry you
Phrannie, I am so sorry you are going through this again. But I am hopeful the Keytruda and your amazing positive attitude will prevail! Hugs!!
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I pray that all will be well.phrannie51 said:I had my first infusion this
morning, CE....wow, such a difference from the last chemo rodeo. I was there a total of two hours.....first 1/2 hour spent touring the facility (I have the same Onc as last time, but the infusion center is new)....the next 40 minutes spent getting infused....and the rest of the time they kept me to watch me to make sure no reaction. No pre-meds, no benedryl, no nothing. Next infusion should be about an hour total.
I feel absolutely no different tonight than I did last night. I'm having not a single iota of side effects (makes me wonder if they really gave me something
.) Sorry, about the melanoma...it's not fair to end up with two different kinds of cancer in the head...that sucks!!!....isn't Keytruda what President Carter got for melanoma?
p
I pray that all will be well. I'm happy this treatment isn't bad for you so far. Thumbs up!!
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Wishing you
the very best response!!
Crystal
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Well now.....phrannie51 said:I had my first infusion this
morning, CE....wow, such a difference from the last chemo rodeo. I was there a total of two hours.....first 1/2 hour spent touring the facility (I have the same Onc as last time, but the infusion center is new)....the next 40 minutes spent getting infused....and the rest of the time they kept me to watch me to make sure no reaction. No pre-meds, no benedryl, no nothing. Next infusion should be about an hour total.
I feel absolutely no different tonight than I did last night. I'm having not a single iota of side effects (makes me wonder if they really gave me something
.) Sorry, about the melanoma...it's not fair to end up with two different kinds of cancer in the head...that sucks!!!....isn't Keytruda what President Carter got for melanoma?
p
it looks like I'm one week ahead of you ( had my 1st on 6-19 ), so I'll be leading the way. Yes, after 30 minutes of being there after placement, I assumed they were pumping me with that ole saline water that they used prior to Chemo. She then walks over and says, "Okay, your finished. See ya in 3 weeks."
The only side effect is a little bit of tiredness, but being 69 may have a bunch to do with that. Being that my quarter sized tumour is on a nerve at the far rear of my right lower mandable, seems the T-Cells and the Cancer cells had a minor 40 second skirmish last Saturday afternoon. Just some stinging and weird sensations. I'm assuming the larger battles will be further on down the road. Gonna have to get my popcorn ready and learn some new cheers.
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So this is day number 3....CajunEagle said:Well now.....
it looks like I'm one week ahead of you ( had my 1st on 6-19 ), so I'll be leading the way. Yes, after 30 minutes of being there after placement, I assumed they were pumping me with that ole saline water that they used prior to Chemo. She then walks over and says, "Okay, your finished. See ya in 3 weeks."
The only side effect is a little bit of tiredness, but being 69 may have a bunch to do with that. Being that my quarter sized tumour is on a nerve at the far rear of my right lower mandable, seems the T-Cells and the Cancer cells had a minor 40 second skirmish last Saturday afternoon. Just some stinging and weird sensations. I'm assuming the larger battles will be further on down the road. Gonna have to get my popcorn ready and learn some new cheers.
and this morning I had a little cough...that's a common side effect....and it lasted about 15 minutes. To be honest, I was glad to have it, so I could quit worrying that they didn't really give me anything
. I felt a burning/stinging in my neck yesterday and today....so maybe that really IS the T-cells kicking some butt? I'm not far behind you in the age department, and part of my problem since the beginning has been is this age? Is this cancer? Is the treatment related? Every little thing...from having a stiff neck to lack of energy to bone aches. I keep thinking..."something HAS to be old age....it can't ALL be cancer/treatment related!!" If it is all cancer/treatment related, then if I'd never had cancer I'd be so healthy I'd still be working...because I wanted to, not because I had to!
Anyway, CE.....here's to us....and to all guinea pigs everywhere....LOL.
p
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Oh Phrannie, I am sad to read this 3rd time.
I was sorry to read this Phrannie. You were doing so well, then #2 hit. You fought that and looking good. I have read good things about Keytruda and saw many ads about it. I just would like it better with other wording, but it is better than Chemo. It seemed like several members all got it back for the 2nd time right around the same time. Oh, the things we have seen and learned. The terminology I wish no one ever had to here. I don't really get to this site much anymore. I spend so much time with the Laryngectomee support group and running the Forum and Facebook Group as well. I do thank you and many others for what I learned here. It has helped so many others. Now I am fighting the local hospital and trying to get them the training they need. They just don't understand a neck breather and how to get oxygen to us.
Please know you have always been in my thoughts and prayers. The list now is so long, at night I just hold up the pages and say,"You got this, right" I do pray this will work and no 4th time.
Bill 10/20130 -
I'm so sorry to hear this
phrannie,
so sorry to hear this. you keep us going. Thanks for sharing your journey with us, despite the multiple road blocks you're hitting. It takes a lot of courage. You will be in my prayers for this. I hope Keytruda works out. Stay positive (as you always do!) and, you're probably going through the hardest time now that I see it's about 2 weeks into treatment. Hope the side effects are easy for you to deal with. Knowing what you've been through the first 2 times, hopefully it's easier on the mind!
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I'm so sorry...
I haven't been on here lately, signed on and saw this. Prayers treatment will be successful!!
Joanne
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Keytruda
Phrannie- I hope you're feeling ok. I went through the exact same treatment as you back in 2013 for NPC so I have followed your story closely over the years. You are an inspiration to many people. OK, enough of the sappy commentary. I want to tell you a little story about my Father, He has beaten Cancer twice. Bladder Cancer 15 years ago and most recently Metastatic Melanoma. Over 2 years ago he was diagnosed with terminal metastatic Melanoma and told to get his affairs in order as he had very little time left. The cancer came on quickly and had spread throughout his body in a matter of weeks. His PET scan lit up everywhere. Tumors on his liver, his intestines, his Jaw and lymph nodes throughout his body including an Orange size tumor under his arm. He got approval to try Keytruda after a dose of Chemo did nothing. He went on the Keytruda and gets a treatment every 3 weeks. His first PET scan after only 3 treatments showed huge improvements in all areas. His next PET scan he was NED! His body was riddled with Tumors and now Nothing. Every PET scan since then has been NED. He has a few annoying side effects but we all know how that goes. I hope this helps you stay positive and gives you some confidence in Keytruda. It is kicking some major butt for many people. He also stated that he could feel it working when he would feel pain, tingling and burning at the Tumor sites after the first couple of treatments. Stay strong and kick some butt for the third time. Prayers sent!
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That's amazing, L!letumwork said:Keytruda
Phrannie- I hope you're feeling ok. I went through the exact same treatment as you back in 2013 for NPC so I have followed your story closely over the years. You are an inspiration to many people. OK, enough of the sappy commentary. I want to tell you a little story about my Father, He has beaten Cancer twice. Bladder Cancer 15 years ago and most recently Metastatic Melanoma. Over 2 years ago he was diagnosed with terminal metastatic Melanoma and told to get his affairs in order as he had very little time left. The cancer came on quickly and had spread throughout his body in a matter of weeks. His PET scan lit up everywhere. Tumors on his liver, his intestines, his Jaw and lymph nodes throughout his body including an Orange size tumor under his arm. He got approval to try Keytruda after a dose of Chemo did nothing. He went on the Keytruda and gets a treatment every 3 weeks. His first PET scan after only 3 treatments showed huge improvements in all areas. His next PET scan he was NED! His body was riddled with Tumors and now Nothing. Every PET scan since then has been NED. He has a few annoying side effects but we all know how that goes. I hope this helps you stay positive and gives you some confidence in Keytruda. It is kicking some major butt for many people. He also stated that he could feel it working when he would feel pain, tingling and burning at the Tumor sites after the first couple of treatments. Stay strong and kick some butt for the third time. Prayers sent!
That's amazing, L!
phrannie, I'm new but rooting for you!
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