› Forums › General Melanoma Community › Waving Hello~ Stage IV stretching towards 5 years cancer free
- This topic has 107 replies, 27 voices, and was last updated 11 years, 3 months ago by
LibbyinVA.
- Post
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- April 3, 2011 at 6:48 pm
Well its been over a year since I last posted on here, so I wanted to touch base and meet the new folks and look for my old survivor friends and caretakers that I grew to love and hug 🙂
Update on myself, June will be my 5 years NED/Cancer free milestone from a stage IV diagnosis.
For those of you that dont know me yet, my melanoma was in both lungs, my liver, a tumor wrapped around my espohogus, all the lymph nodes in my chest were filled with melanoma and I had 2 hot spots on 2 bones that had exterior beginnings of melanoma penetration…..
Well its been over a year since I last posted on here, so I wanted to touch base and meet the new folks and look for my old survivor friends and caretakers that I grew to love and hug 🙂
Update on myself, June will be my 5 years NED/Cancer free milestone from a stage IV diagnosis.
For those of you that dont know me yet, my melanoma was in both lungs, my liver, a tumor wrapped around my espohogus, all the lymph nodes in my chest were filled with melanoma and I had 2 hot spots on 2 bones that had exterior beginnings of melanoma penetration…..
I was given 6-9 months to live……………. underwent High Dose IL-2 (interleukin-2) managed to get 56 bags in….and I was as blessed as can be, a complete responder after 9 months of in and out of ICU doing the IL-2.
I hope my story will offer those of you newly diagnosed the wonderful word HOPE…. and to all my survivor friends and caretakers a huge hug and hello and hoping as always life is holding all the good days one can muster after being dealt this life altering disease and experience.
I plan to try and sign on from time to time, to keep some spirits high and to offer a shoulder or high five when the celebrations come along!
Hugs to you all~
JanefromMaine.
(used to be) JanefromMaineinNC 😉
- Replies
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- April 3, 2011 at 7:41 pm
Wait: which one am I? New-no, caretaker-no. It must be friend!
I know you have been gone some time from here, but I still keep tabs on facebook.
Not to mention, I have been passing out your IL-2 tipsheet soo much you owe me a few reams of paper for my nest birthday!
Congrats on the IL-2, five years out is utterly fantastic!
May you have a life long more!
Michael
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- April 4, 2011 at 12:07 am
oxoxxo Michael~ your the best! 😉 see I knew I could take a break and all would be in perfectly terrific hands 🙂 (yours)
Thanks for the reply~ cheers and a hug for you! 😉
AND FRIEND INDEED!!!
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- April 4, 2011 at 12:07 am
oxoxxo Michael~ your the best! 😉 see I knew I could take a break and all would be in perfectly terrific hands 🙂 (yours)
Thanks for the reply~ cheers and a hug for you! 😉
AND FRIEND INDEED!!!
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- April 5, 2011 at 1:34 am
Hi,
I just became a member. My husband is stage IV metastatic melanoma. This is year six of the battle and he starts IL-2 on Monday at Moffitt in Tampa, Florida.
I saw reference to an IL-2 Tip sheet and was wondering if I could access it.
Thanks so much.
JeanneD
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- April 5, 2011 at 2:55 pm
Hello Jeanne
Yes you sure can, email me at [email protected] and I will gladly send it to you and please feel free to ask any questions once you get it.
This sheet will help in many ways. And it definately helps to get an idea of what is going to be normal while doing this treatment,
Go in it to win it with this treatment! All mt best~ Jane
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- April 5, 2011 at 2:55 pm
Hello Jeanne
Yes you sure can, email me at [email protected] and I will gladly send it to you and please feel free to ask any questions once you get it.
This sheet will help in many ways. And it definately helps to get an idea of what is going to be normal while doing this treatment,
Go in it to win it with this treatment! All mt best~ Jane
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- April 6, 2011 at 7:28 pm
Here it is from another post if you need it! And some other items I have gathered:
Jane is the Resident IL-2 expert at MRF, and she speaks from experience. Her website IL-2 tip sheet page is linked here:
http://www.operationsunshield.org/tipsheet.html
There is also much good reading elsewhere on her site so you may want to "surf" it a little.
There are others here that may be able to assist you as well. Jerry from Fauq comes to mind off hand. Maybe others will see your post soon and chime in.
I also hope you don’t mind me posting this information I have compiled from other sources, but you may find some of these things helpful regarding the treatment and hospital stay.
From several other people, places and posts:
I am sure you are aware that IL-2 is a treatment that will require a hospital stay while it is being administered, so I wanted to share with you a list of some others peoples experience with IL-2 that could possibly help you both while in the hospital. Although I have added or modified a few things, this is for the most part not my list, so I have to give credit to Jane Caddell, but I thought you might find it helpful as it is from a patients point of view. As always, it is a good idea to discuss some of these items with your doctor before taking them. Please do not let this list overly worry you as this is just to prepare in advance for varied possibilities.
The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down the room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. This may sound silly, but in addition to your treatment, you do not want to get any infections while in the hospital.
Things to bring:
Your own sheets, pillow, and blanket
Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
Soft toilet paper
2 cases of bottled water
2 bunches of bananas
SARNA anti-itch lotion
A good lip balm
A I-pod or some music that has a headset- bring relaxing music
Some sort of protein drink that is sugar free that can be mixed with water
A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
A heating pad
Slide on slippers
A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
You may wish to have them give you an Adivan (or other anxiety drug if needed) an hour before they do the PICC line. It will help with the anxiety. Also, make sure any PICC lines (or intraveneous lines) are sterile to avoid infection.
To help with the sensation of cold feet, hands, chilly etc. you may wish to ask for the warm heated blankets that the hospital should have on hand.
Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet.
If the warm blankets don’t stop you from shaking, you may wish to ask about giving you Morphine before it turns into the rigors. (Provided the patient has no reactions to morphine)
Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that the I.V. fluids you are getting are enough. It’s NOT.
They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people. It is used for chemotherapy treatment for cancer. It is especially used for those patients who do not respond to other medicines for nausea and vomiting.
You may want to ask about Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. It helps you make more urine and to lose salt and excess water from your body. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off in just a few short days with the water pills.
Try to eat 2 bananas a day so your potassium levels don’t get depleted.
As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous. Lidocaine viscous, a local anesthetic, is used to treat the pain of a sore or irritated mouth and throat often associated with cancer chemotherapy and certain medical procedures.
Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.
When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while.
When your blood pressure drops they will work with it to raise it, so this is normal.
If you can’t sleep make sure they give you a sleep aid.
You will also experience fevers, and they will keep you on Tylenol. You may also wish to take some before you start the treatment.
Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.
Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.
You may wish to inquire about itch pills called Hydroxyzine HCL. These help with the itching.
If you have fluid in your ears you may want to take a benadryl, this helps a lot. (provided you are not allergic)
Also be aware of a condition known as capillary leak syndrome (CLS). CLS results in swelling caused by fluids leaking out of blood vessels into surrounding tissues. CLS caused a drop in blood pressure and decrease blood flow to body organs. The doctors should already be aware of this.
Best wishes, and good luck with the IL-2.
Michael
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- April 6, 2011 at 7:50 pm
Thank you both, Jane and Michael. I really appreciate the info especially Jane's list and willingness to answer my never ending questions.
Since my husband has also had open heart surgery (2000) we had to have a Persantine Thallium Stress Test done before Moffitt would let us go any further. They now have the results and we should be good to go on Monday. Hopefully this will stop the monster within.
Jeanne
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- April 7, 2011 at 1:03 pm
Thanks Michael your the best!
It makes me feel great that you and others continue on here with all you do, I'm in the middle of projects so took alittle of my free time to jump back on and it feels great knowing when I have to step back to focus on some other things knowing your endless help continues. Thats huge 🙂 A big hug to you for keeping that hope and help out there~ox
Jeanne you have all my contact info, please use it if you need it….this is what life is all about, I had many on here help me in the beginning so we pay it all forward….as will you too my new friend 🙂
You and your husband have created the "Jeanne Team" so go into it with all your heart, remember there might be stumbles, but dust off and move forward, remember your in it to win it!!!! ox
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- April 7, 2011 at 1:03 pm
Thanks Michael your the best!
It makes me feel great that you and others continue on here with all you do, I'm in the middle of projects so took alittle of my free time to jump back on and it feels great knowing when I have to step back to focus on some other things knowing your endless help continues. Thats huge 🙂 A big hug to you for keeping that hope and help out there~ox
Jeanne you have all my contact info, please use it if you need it….this is what life is all about, I had many on here help me in the beginning so we pay it all forward….as will you too my new friend 🙂
You and your husband have created the "Jeanne Team" so go into it with all your heart, remember there might be stumbles, but dust off and move forward, remember your in it to win it!!!! ox
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- April 6, 2011 at 7:50 pm
Thank you both, Jane and Michael. I really appreciate the info especially Jane's list and willingness to answer my never ending questions.
Since my husband has also had open heart surgery (2000) we had to have a Persantine Thallium Stress Test done before Moffitt would let us go any further. They now have the results and we should be good to go on Monday. Hopefully this will stop the monster within.
Jeanne
-
- April 6, 2011 at 7:28 pm
Here it is from another post if you need it! And some other items I have gathered:
Jane is the Resident IL-2 expert at MRF, and she speaks from experience. Her website IL-2 tip sheet page is linked here:
http://www.operationsunshield.org/tipsheet.html
There is also much good reading elsewhere on her site so you may want to "surf" it a little.
There are others here that may be able to assist you as well. Jerry from Fauq comes to mind off hand. Maybe others will see your post soon and chime in.
I also hope you don’t mind me posting this information I have compiled from other sources, but you may find some of these things helpful regarding the treatment and hospital stay.
From several other people, places and posts:
I am sure you are aware that IL-2 is a treatment that will require a hospital stay while it is being administered, so I wanted to share with you a list of some others peoples experience with IL-2 that could possibly help you both while in the hospital. Although I have added or modified a few things, this is for the most part not my list, so I have to give credit to Jane Caddell, but I thought you might find it helpful as it is from a patients point of view. As always, it is a good idea to discuss some of these items with your doctor before taking them. Please do not let this list overly worry you as this is just to prepare in advance for varied possibilities.
The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down the room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. This may sound silly, but in addition to your treatment, you do not want to get any infections while in the hospital.
Things to bring:
Your own sheets, pillow, and blanket
Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
Soft toilet paper
2 cases of bottled water
2 bunches of bananas
SARNA anti-itch lotion
A good lip balm
A I-pod or some music that has a headset- bring relaxing music
Some sort of protein drink that is sugar free that can be mixed with water
A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
A heating pad
Slide on slippers
A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
You may wish to have them give you an Adivan (or other anxiety drug if needed) an hour before they do the PICC line. It will help with the anxiety. Also, make sure any PICC lines (or intraveneous lines) are sterile to avoid infection.
To help with the sensation of cold feet, hands, chilly etc. you may wish to ask for the warm heated blankets that the hospital should have on hand.
Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet.
If the warm blankets don’t stop you from shaking, you may wish to ask about giving you Morphine before it turns into the rigors. (Provided the patient has no reactions to morphine)
Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that the I.V. fluids you are getting are enough. It’s NOT.
They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people. It is used for chemotherapy treatment for cancer. It is especially used for those patients who do not respond to other medicines for nausea and vomiting.
You may want to ask about Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. It helps you make more urine and to lose salt and excess water from your body. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off in just a few short days with the water pills.
Try to eat 2 bananas a day so your potassium levels don’t get depleted.
As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous. Lidocaine viscous, a local anesthetic, is used to treat the pain of a sore or irritated mouth and throat often associated with cancer chemotherapy and certain medical procedures.
Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.
When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while.
When your blood pressure drops they will work with it to raise it, so this is normal.
If you can’t sleep make sure they give you a sleep aid.
You will also experience fevers, and they will keep you on Tylenol. You may also wish to take some before you start the treatment.
Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.
Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.
You may wish to inquire about itch pills called Hydroxyzine HCL. These help with the itching.
If you have fluid in your ears you may want to take a benadryl, this helps a lot. (provided you are not allergic)
Also be aware of a condition known as capillary leak syndrome (CLS). CLS results in swelling caused by fluids leaking out of blood vessels into surrounding tissues. CLS caused a drop in blood pressure and decrease blood flow to body organs. The doctors should already be aware of this.
Best wishes, and good luck with the IL-2.
Michael
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- April 5, 2011 at 1:34 am
Hi,
I just became a member. My husband is stage IV metastatic melanoma. This is year six of the battle and he starts IL-2 on Monday at Moffitt in Tampa, Florida.
I saw reference to an IL-2 Tip sheet and was wondering if I could access it.
Thanks so much.
JeanneD
-
- April 3, 2011 at 7:41 pm
Wait: which one am I? New-no, caretaker-no. It must be friend!
I know you have been gone some time from here, but I still keep tabs on facebook.
Not to mention, I have been passing out your IL-2 tipsheet soo much you owe me a few reams of paper for my nest birthday!
Congrats on the IL-2, five years out is utterly fantastic!
May you have a life long more!
Michael
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- April 3, 2011 at 8:26 pm
Hi Jane,
Thanks for the update and good news of continued NED.
Jerry from Cape Cod
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- April 4, 2011 at 12:10 am
Great to hear from you Jerry~ hoping all has been well for you too? I'm alittle closer now, Maine versus NC~ what a winter!
Keep in touch! Hugs~ Jane
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- April 4, 2011 at 12:10 am
Great to hear from you Jerry~ hoping all has been well for you too? I'm alittle closer now, Maine versus NC~ what a winter!
Keep in touch! Hugs~ Jane
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- April 3, 2011 at 8:26 pm
Hi Jane,
Thanks for the update and good news of continued NED.
Jerry from Cape Cod
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- April 4, 2011 at 12:15 am
HI Jane,
Great to hear from you. You and Debbie were a great help to me with my husband Bob when he started IL-2. He has been through a lot but he just got clear scans – now 20 months NED.
Thanks for the great news! What a thing to celebrate 5 years.
Rebecca and Bob
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- April 4, 2011 at 12:37 am
Awesome, Rebecca. IL-2 is really rough, you're right. How long did he do the treatment?
I wish you blessings, and for Bob to continue NED status!
Hugs,
Suzanne
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- April 6, 2011 at 12:50 am
Hi Suzanne,
He did the 3 sets or 6 rounds. It took care of the lung tumors but a few showed up in the small intestine a year later. After surgery for that he has been clear for 20 months. I hope two years comes and goes with NED news.
Wishing you conitinued NED as well!
Rebecca
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- April 6, 2011 at 12:50 am
Hi Suzanne,
He did the 3 sets or 6 rounds. It took care of the lung tumors but a few showed up in the small intestine a year later. After surgery for that he has been clear for 20 months. I hope two years comes and goes with NED news.
Wishing you conitinued NED as well!
Rebecca
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- April 4, 2011 at 12:37 am
Awesome, Rebecca. IL-2 is really rough, you're right. How long did he do the treatment?
I wish you blessings, and for Bob to continue NED status!
Hugs,
Suzanne
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- April 5, 2011 at 12:52 am
Hi Rebecca~ so glad to hear everything is still going well with Bob, I remember all too well trying to convince all will be well, IL-2 when it rocks its rocks well!!! hugs to you both and keep up the great fight! Hes almost 2 years!!! 🙂
ox
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- April 5, 2011 at 12:52 am
Hi Rebecca~ so glad to hear everything is still going well with Bob, I remember all too well trying to convince all will be well, IL-2 when it rocks its rocks well!!! hugs to you both and keep up the great fight! Hes almost 2 years!!! 🙂
ox
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- April 4, 2011 at 12:15 am
HI Jane,
Great to hear from you. You and Debbie were a great help to me with my husband Bob when he started IL-2. He has been through a lot but he just got clear scans – now 20 months NED.
Thanks for the great news! What a thing to celebrate 5 years.
Rebecca and Bob
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- April 4, 2011 at 12:35 am
Jane, that is so wonderful! I too am a stage IV survivor, it will be my 5 year milestone in November. I was given the 6 to 9 months diagnosis too. I was on Biochemotherapy and IL-2 for 18 long months. My involvement was not as extensive as yours, neck lymph nodes and lung met.
There is hope out here. I would do the same thing that I did in a heartbeat. High five back to you!
~Suzanne
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- April 5, 2011 at 12:55 am
Hi Suzanne congrats too on your survivorship! And I agree I would jump back in that bed and load myself up with IL-2 if ever needed!! (hopefully NOT) but oh yes, bring on the butt kickin if ever need be! I hear ya 😉
Congrats again! ox
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- April 5, 2011 at 12:55 am
Hi Suzanne congrats too on your survivorship! And I agree I would jump back in that bed and load myself up with IL-2 if ever needed!! (hopefully NOT) but oh yes, bring on the butt kickin if ever need be! I hear ya 😉
Congrats again! ox
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- April 4, 2011 at 12:35 am
Jane, that is so wonderful! I too am a stage IV survivor, it will be my 5 year milestone in November. I was given the 6 to 9 months diagnosis too. I was on Biochemotherapy and IL-2 for 18 long months. My involvement was not as extensive as yours, neck lymph nodes and lung met.
There is hope out here. I would do the same thing that I did in a heartbeat. High five back to you!
~Suzanne
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- April 4, 2011 at 9:37 am
Jane,
great post…very inspiring!! I hope you and NED live a long life together!!
all my best,
Kevin
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- April 4, 2011 at 3:15 pm
Congratulations Jane, that is terrific news and I am so happy for you!!! You are referenced a lot on this board, so we think of you often!!!!
Vermont_Donna, stage 3a
stable after 4 infusions of ipi
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- April 4, 2011 at 3:15 pm
Congratulations Jane, that is terrific news and I am so happy for you!!! You are referenced a lot on this board, so we think of you often!!!!
Vermont_Donna, stage 3a
stable after 4 infusions of ipi
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- April 5, 2011 at 12:57 am
Awe Thanks Kevin, and YES I'm gonna stick it out with NED, we are lovin life 😉 although I do share 🙂 lol
Hope you are doing well and thanks for the kind words 😉
Cheers!
Jane
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- April 5, 2011 at 12:57 am
Awe Thanks Kevin, and YES I'm gonna stick it out with NED, we are lovin life 😉 although I do share 🙂 lol
Hope you are doing well and thanks for the kind words 😉
Cheers!
Jane
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- April 4, 2011 at 7:37 pm
I'm just a Stage IIIc "slacker", but I love to hear stories like this (and KevinM's). Best wishes to you both for staying NED forever!
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- April 5, 2011 at 12:23 am
Thanks Rich,
You are not a slacker, but your story is so much like mine, I really can relate to you. Best wishes for you to stay NED forever too! We need to eradicate this disease! Am enjoying your blog, keep up the good work!
Suzanne
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- April 5, 2011 at 12:23 am
Thanks Rich,
You are not a slacker, but your story is so much like mine, I really can relate to you. Best wishes for you to stay NED forever too! We need to eradicate this disease! Am enjoying your blog, keep up the good work!
Suzanne
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- April 7, 2011 at 1:36 pm
Rich~ there are no slackers in this hell hole of melanoma only "warriors" be it from first stage to IV .
Your own victory is equally enduring, all of the unknowns we all share. So CHEERS and thank you for your kind words of continued NED, Kevin and I both love NED, so we share….lol
All my best to you and wishing you also to stay in NED-ville 😉
Terra~ thank you and I certainly know how important it is to read stories of hope~ Its what helped me when I was first diagnosed, reading all the amazing survivor stories and the courage and determination that I would read was definately a huge part of my own battle, take care and thanks for your kind words 😉 ox
DONNNA VERMONT!!!! Soooo great to read your reply! I have thought often of you over my past year and it is wonderful to see your reply, you have heart gurl and I wish all good things for you, I would love for you to drop me a note from time to time now that Im back in Maine.
Take care and a big hug to you all! I will stay better intouch too~ as I do think of everyone as time goes by
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- April 7, 2011 at 1:36 pm
Rich~ there are no slackers in this hell hole of melanoma only "warriors" be it from first stage to IV .
Your own victory is equally enduring, all of the unknowns we all share. So CHEERS and thank you for your kind words of continued NED, Kevin and I both love NED, so we share….lol
All my best to you and wishing you also to stay in NED-ville 😉
Terra~ thank you and I certainly know how important it is to read stories of hope~ Its what helped me when I was first diagnosed, reading all the amazing survivor stories and the courage and determination that I would read was definately a huge part of my own battle, take care and thanks for your kind words 😉 ox
DONNNA VERMONT!!!! Soooo great to read your reply! I have thought often of you over my past year and it is wonderful to see your reply, you have heart gurl and I wish all good things for you, I would love for you to drop me a note from time to time now that Im back in Maine.
Take care and a big hug to you all! I will stay better intouch too~ as I do think of everyone as time goes by
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- April 4, 2011 at 8:54 pm
Jane from Maine,
I just registered for this website after having been diagnosed a few weeks ago with Stage IV Melanoma that is now in my lungs appearing as tiny tumors. I met with the Melanoma specialists at UCSF and they are doing new tests on the specimens removed from my back and lung in order to determine course of treatment. I was very encouraged by the Dr. as to the new treatments of inhibitors to shrink melanoma tumors, but your posting is the first I have come across that gives me even more hope for eradicating this disease from my body. God Bless You for sharing your story and I hope to see more posts from you in the future. Robert
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- April 5, 2011 at 1:08 am
Hi Robert~ One thing I will say is….you seem to be in a very good position…and by this i mean your disease is tiny tumors…SO believe me when I say, you have the reins, the disease hasnt overcome your organs, so FIGHT agressive!
And sign up for the biggest stick and knock the mel right out of you, it can be done and is done and you can be yet another survivor story, so think agressive treatment and BIG stick!
Louise Hay metaphysical healer CD called "Cancer" buy it, listen to it over and over and over, she will bring your mind to the place of where your mind needs you to be to also mentally battle this disease back… I always say on this CD she can talk the stripes off a Zebra…
I found this CD VERY CALMING, VERY EMPOWERING, VERY SOOTHING….often putting me to sleep. Its best used with headphones so everything else is blocked out, just you and her and her walking you thru envisioning cancer out of your body.
Best of luck and ALWAYS happy to hear that HOPE is brought, because my friend there is still plenty of hope for you and many others!
Stay strong! ~ Jane
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- April 5, 2011 at 1:08 am
Hi Robert~ One thing I will say is….you seem to be in a very good position…and by this i mean your disease is tiny tumors…SO believe me when I say, you have the reins, the disease hasnt overcome your organs, so FIGHT agressive!
And sign up for the biggest stick and knock the mel right out of you, it can be done and is done and you can be yet another survivor story, so think agressive treatment and BIG stick!
Louise Hay metaphysical healer CD called "Cancer" buy it, listen to it over and over and over, she will bring your mind to the place of where your mind needs you to be to also mentally battle this disease back… I always say on this CD she can talk the stripes off a Zebra…
I found this CD VERY CALMING, VERY EMPOWERING, VERY SOOTHING….often putting me to sleep. Its best used with headphones so everything else is blocked out, just you and her and her walking you thru envisioning cancer out of your body.
Best of luck and ALWAYS happy to hear that HOPE is brought, because my friend there is still plenty of hope for you and many others!
Stay strong! ~ Jane
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- April 9, 2011 at 9:08 am
Hello Robert,
I had one of my tiny tumors removed from my right lung using the VATS procedure at UCSF. We will meet with Dr. "K" the surgeon on Good Friday to discuss tumor pathology…what type of melanoma, growth rate, etc. then decide what additional treatments. I have nodes/tumors in both lungs, chest wall so we are looking at IL-2, or B-raf/mek, or Interferon…
There is a wealth of information available here, so I read and and read some more. Good luck, S.F. is a beautiful city.
My best to you and yours,
Suzan AB
Stage IV Decision Time
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- April 9, 2011 at 9:08 am
Hello Robert,
I had one of my tiny tumors removed from my right lung using the VATS procedure at UCSF. We will meet with Dr. "K" the surgeon on Good Friday to discuss tumor pathology…what type of melanoma, growth rate, etc. then decide what additional treatments. I have nodes/tumors in both lungs, chest wall so we are looking at IL-2, or B-raf/mek, or Interferon…
There is a wealth of information available here, so I read and and read some more. Good luck, S.F. is a beautiful city.
My best to you and yours,
Suzan AB
Stage IV Decision Time
-
- April 4, 2011 at 8:54 pm
Jane from Maine,
I just registered for this website after having been diagnosed a few weeks ago with Stage IV Melanoma that is now in my lungs appearing as tiny tumors. I met with the Melanoma specialists at UCSF and they are doing new tests on the specimens removed from my back and lung in order to determine course of treatment. I was very encouraged by the Dr. as to the new treatments of inhibitors to shrink melanoma tumors, but your posting is the first I have come across that gives me even more hope for eradicating this disease from my body. God Bless You for sharing your story and I hope to see more posts from you in the future. Robert
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- April 4, 2011 at 8:54 pm
Jane from Maine,
I just registered for this website after having been diagnosed a few weeks ago with Stage IV Melanoma that is now in my lungs appearing as tiny tumors. I met with the Melanoma specialists at UCSF and they are doing new tests on the specimens removed from my back and lung in order to determine course of treatment. I was very encouraged by the Dr. as to the new treatments of inhibitors to shrink melanoma tumors, but your posting is the first I have come across that gives me even more hope for eradicating this disease from my body. God Bless You for sharing your story and I hope to see more posts from you in the future. Robert
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- April 5, 2011 at 12:19 am
Hi Robert,
I just saw your posting to Jane. I am from the S.F. Bay Area and had my treatment at California Pacific Medical Center. Who do you see? I had a radical neck dissection and also had a lung met in 2006. So far NED for me as well and if I have a clear CT scan in May and come November I will be 5 years NED also!
Feel free to check my profile.
Best of luck to you. Would you be going to the MRF Gala in San Francisco on May the 4th?
~Suzanne
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- April 6, 2011 at 7:23 pm
Suzanne,
Congratulations on 5 years NED!!!!!!!! Also, thanks for your post, I'm sure you know how much it means to someone just diagnosed that there is hope. I have been so encouraged by the stories on this message board. I wasn't aware of the MRF Gala in SF, but it just happens to fall on my birthday so maybe I'll go.
Take care.
Robert
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- April 7, 2011 at 8:06 pm
Hi Robert,
It would be truly awesome to meet you at the Gala in S.F. I think there is info right here on the board about it. It is the third annual. I have met many fellow warriors there and of course it is for a great cause since melanoma is an underfunded cancer. Where do you live? I am in the East Bay, Danville. If you have trouble getting info on the details of the Gala, I can send you an invitation in the mail.
Look forward to meeting you and wishing you a happy birthday!
Suzanne
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- April 25, 2011 at 6:18 pm
Hi Suzanne,
Still trying to figure out how posts work on this board. Did you go to the GALA? How did your meeting go in SF with your Doctor? I think you were going before Easter. This Wednesday my wife and I are flying to The Angeles Clinic in LA to see a Dr. Steven O'Day for a 2nd opinion, then to UCSF and Dr. Daud on Thursday to review the BRAF/MEK/RAS testing they did to my tissue blocks. I'm getting very close to a treatment plan, I hope. Waiting, as this rotten disease has a chance to spread is really tough, but when I put it into perspecitve of what many on this forum are dealing with, I'm a big sissy. I am blessed to be surrounded by a loving wife and family and so many friends praying for me. Strength, courage, and hope are what I pray for every day now. I will include you in those prayers.
Robert
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- April 26, 2011 at 12:16 am
Hi Robert,
The Gala in San Francisco is May the 4th. Dr. O'Day is being honored. I hope you might be able to attend. My Dr. is David Minor in San Francisco. My tumor was negative for all the common melanoma markers. Actually my appt. with Dr. Minor is coming up in May as well as my CT scan. I also will be flying to Philadelphia to see my Ocular Oncologists in late May. I will be praying for you as well, keep me posted!
Suzanne
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- April 26, 2011 at 5:08 pm
Good to hear from you. It sounds like your tumor being negative for all the melanoma markers is good news! Not sure if I will be able to attend the gala as insurance copays and out of network costs are adding up! I'll let you know how my 2 appointments go this week.
Take Care,
Robert
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- April 26, 2011 at 5:08 pm
Good to hear from you. It sounds like your tumor being negative for all the melanoma markers is good news! Not sure if I will be able to attend the gala as insurance copays and out of network costs are adding up! I'll let you know how my 2 appointments go this week.
Take Care,
Robert
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- April 26, 2011 at 12:16 am
Hi Robert,
The Gala in San Francisco is May the 4th. Dr. O'Day is being honored. I hope you might be able to attend. My Dr. is David Minor in San Francisco. My tumor was negative for all the common melanoma markers. Actually my appt. with Dr. Minor is coming up in May as well as my CT scan. I also will be flying to Philadelphia to see my Ocular Oncologists in late May. I will be praying for you as well, keep me posted!
Suzanne
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- April 26, 2011 at 7:07 pm
Thanks for hope. I am stage 4, had been doing well but last weeks MRI showed brain METS. Now I am scheduled for surgery next week. The plan is to start Ippi folowing the sugery. But I want to thank you for posting hopeful messages….we may not beat this but we can learn to manage it. Thanks again,
Nancy from Michigan.
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- April 26, 2011 at 7:07 pm
Thanks for hope. I am stage 4, had been doing well but last weeks MRI showed brain METS. Now I am scheduled for surgery next week. The plan is to start Ippi folowing the sugery. But I want to thank you for posting hopeful messages….we may not beat this but we can learn to manage it. Thanks again,
Nancy from Michigan.
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- April 25, 2011 at 6:18 pm
Hi Suzanne,
Still trying to figure out how posts work on this board. Did you go to the GALA? How did your meeting go in SF with your Doctor? I think you were going before Easter. This Wednesday my wife and I are flying to The Angeles Clinic in LA to see a Dr. Steven O'Day for a 2nd opinion, then to UCSF and Dr. Daud on Thursday to review the BRAF/MEK/RAS testing they did to my tissue blocks. I'm getting very close to a treatment plan, I hope. Waiting, as this rotten disease has a chance to spread is really tough, but when I put it into perspecitve of what many on this forum are dealing with, I'm a big sissy. I am blessed to be surrounded by a loving wife and family and so many friends praying for me. Strength, courage, and hope are what I pray for every day now. I will include you in those prayers.
Robert
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- April 7, 2011 at 8:06 pm
Hi Robert,
It would be truly awesome to meet you at the Gala in S.F. I think there is info right here on the board about it. It is the third annual. I have met many fellow warriors there and of course it is for a great cause since melanoma is an underfunded cancer. Where do you live? I am in the East Bay, Danville. If you have trouble getting info on the details of the Gala, I can send you an invitation in the mail.
Look forward to meeting you and wishing you a happy birthday!
Suzanne
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- April 6, 2011 at 7:23 pm
Suzanne,
Congratulations on 5 years NED!!!!!!!! Also, thanks for your post, I'm sure you know how much it means to someone just diagnosed that there is hope. I have been so encouraged by the stories on this message board. I wasn't aware of the MRF Gala in SF, but it just happens to fall on my birthday so maybe I'll go.
Take care.
Robert
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- April 5, 2011 at 12:19 am
Hi Robert,
I just saw your posting to Jane. I am from the S.F. Bay Area and had my treatment at California Pacific Medical Center. Who do you see? I had a radical neck dissection and also had a lung met in 2006. So far NED for me as well and if I have a clear CT scan in May and come November I will be 5 years NED also!
Feel free to check my profile.
Best of luck to you. Would you be going to the MRF Gala in San Francisco on May the 4th?
~Suzanne
-
- April 4, 2011 at 8:54 pm
Jane from Maine,
I just registered for this website after having been diagnosed a few weeks ago with Stage IV Melanoma that is now in my lungs appearing as tiny tumors. I met with the Melanoma specialists at UCSF and they are doing new tests on the specimens removed from my back and lung in order to determine course of treatment. I was very encouraged by the Dr. as to the new treatments of inhibitors to shrink melanoma tumors, but your posting is the first I have come across that gives me even more hope for eradicating this disease from my body. God Bless You for sharing your story and I hope to see more posts from you in the future. Robert
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- April 5, 2011 at 4:09 am
Hey Jane, it's so great to hear from you! Congrats on your 5-yr NEDiversary!!
I don't come here much anymore, either… I'm still raising 3 grandgirlies! They be wearing me butt out! I'll be soooo glad when school is over! =)
I'm glad I popped in to see your post, and thrilled you're doing great! Keep it up!!
*Hugz* ~Lisa~
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- April 5, 2011 at 3:02 pm
Hi Lisa!!! xoxoxox 🙂
Thanks for the wave back! And also glad to know your doing well and having fun with the gbabies! 🙂
Hopefully someday my daughter will settle down and grant me that same blessing…although she is now a RN working in mother baby unit and in 6 months will have her Masters to actually deliver babies….SO….I'm thinking its going to be a while!! lol
A big hug to you and catch me on FB if your on there?? Jane Caddell 🙂 Im on there almost everyday! lol
Take care 😉
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- April 5, 2011 at 3:02 pm
Hi Lisa!!! xoxoxox 🙂
Thanks for the wave back! And also glad to know your doing well and having fun with the gbabies! 🙂
Hopefully someday my daughter will settle down and grant me that same blessing…although she is now a RN working in mother baby unit and in 6 months will have her Masters to actually deliver babies….SO….I'm thinking its going to be a while!! lol
A big hug to you and catch me on FB if your on there?? Jane Caddell 🙂 Im on there almost everyday! lol
Take care 😉
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- April 5, 2011 at 4:09 am
Hey Jane, it's so great to hear from you! Congrats on your 5-yr NEDiversary!!
I don't come here much anymore, either… I'm still raising 3 grandgirlies! They be wearing me butt out! I'll be soooo glad when school is over! =)
I'm glad I popped in to see your post, and thrilled you're doing great! Keep it up!!
*Hugz* ~Lisa~
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- April 5, 2011 at 9:55 am
Hi Jane!
Waving right back at you! I hope the great state of Maine is treating you well these days. Likewise the melanoma team at DFCI – my home court. They've kept me on the right path since 2005. Thank you for your many encouraging posts over the years – they have certainly helped me through my journey. I saw your post to KevinM re: skydiving in May to celebrate and raise awareness! Have fun with that!
-Rocco in NH
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- April 5, 2011 at 3:07 pm
I am so glad to hear from you! 🙂 🙂 we really need to try and get together sometime since now we are both in Northeast, heres my email [email protected] would love to get together some day for a lunch and some laughs!
I am really really glad your doing well, you have been thru it, and look at you, you kick butt all over the parking lot girl you 🙂 cheers to this!!!
And YES on the skydiving, care to join??? I figure if I survived stage IV melanoma…..and my shoot fails me on this bucket list checkoff….well thats just the way it is!!!! lol
Hugs to you and drop me an email, k ox
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- April 5, 2011 at 3:07 pm
I am so glad to hear from you! 🙂 🙂 we really need to try and get together sometime since now we are both in Northeast, heres my email [email protected] would love to get together some day for a lunch and some laughs!
I am really really glad your doing well, you have been thru it, and look at you, you kick butt all over the parking lot girl you 🙂 cheers to this!!!
And YES on the skydiving, care to join??? I figure if I survived stage IV melanoma…..and my shoot fails me on this bucket list checkoff….well thats just the way it is!!!! lol
Hugs to you and drop me an email, k ox
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- April 5, 2011 at 9:55 am
Hi Jane!
Waving right back at you! I hope the great state of Maine is treating you well these days. Likewise the melanoma team at DFCI – my home court. They've kept me on the right path since 2005. Thank you for your many encouraging posts over the years – they have certainly helped me through my journey. I saw your post to KevinM re: skydiving in May to celebrate and raise awareness! Have fun with that!
-Rocco in NH
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- April 5, 2011 at 11:52 am
My most beautiful and wonderful friend, so glad to see you back on here. As you know you never got away from me! We won’t remind my semi-foreigner friend, MichealFL where he learned about you. (I call him that because he moved from the next county to Polk where I grew up and still have much family.} He’s a great guy, but you will always be so extra special for all the help you gave me. Have actually got to met him and eat his food. You didn’t have to have your horse accident for me to follow in your path!!!!We all love you so much.
JerryfromFauq
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- April 5, 2011 at 3:12 pm
Hey JerBear 🙂
Ooooh those horses right????? do you know that only on my last scans did I know I actually broke 5 ribs not 3 and of course punctured lung and my shoulder is still seperated……..its a 3 month recovery to have the attachment surgery done….and I am like NO NO NO….but I do know I have to have it at some point….. lol
Love that we stay in touch via FB, Im hoping my life settles down alittle bit in this 2011…..but you know me…..go go go go
And I love ya all so much back, truely truely good people I have made friends with from here 😉
Take care, keep in touch and JUST SAY NO to horses…..thats my new motto!!! lol 😉
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- April 5, 2011 at 3:12 pm
Hey JerBear 🙂
Ooooh those horses right????? do you know that only on my last scans did I know I actually broke 5 ribs not 3 and of course punctured lung and my shoulder is still seperated……..its a 3 month recovery to have the attachment surgery done….and I am like NO NO NO….but I do know I have to have it at some point….. lol
Love that we stay in touch via FB, Im hoping my life settles down alittle bit in this 2011…..but you know me…..go go go go
And I love ya all so much back, truely truely good people I have made friends with from here 😉
Take care, keep in touch and JUST SAY NO to horses…..thats my new motto!!! lol 😉
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- April 5, 2011 at 11:52 am
My most beautiful and wonderful friend, so glad to see you back on here. As you know you never got away from me! We won’t remind my semi-foreigner friend, MichealFL where he learned about you. (I call him that because he moved from the next county to Polk where I grew up and still have much family.} He’s a great guy, but you will always be so extra special for all the help you gave me. Have actually got to met him and eat his food. You didn’t have to have your horse accident for me to follow in your path!!!!We all love you so much.
JerryfromFauq
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- April 5, 2011 at 1:27 pm
Well, hello there, Jane! Long time, no see / hear / read — whatever! Great to know you're still loving life and doing well. I'm not surprised — you're such a fighter. I've had a busy year. Brain mets recurred, had a craniotomy, did a round of ipi, had a mastectomy — and all that's only since last August. I'm waiting to hear now if I go back on ipi, now that the brain has been treated. Anyway, the battle goes on, but surprisingly, I still feel great. I had no side effects with ipi, and I bounced back from all my surgeries like a rubber ball. I responded well with ipi for round 1, so I'm looking forward to round 2 to keep up the shrinkage in my lung. All other sub-qs are gone!!
Keep on enjoying your life! We miss you here on the board, but it's comforting to know you're not around for a good reason. Take care!
Hugs
Sharyn, Stage IV
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- April 5, 2011 at 3:19 pm
Sharyn!!!! You know…..I knew in my heart of hearts that you have the spirit of a lioness to fight on and you have and you will and I just know that SOOON with the 2 new drugs approved you will be ringing the NED bell and living life large!
Your reply warms my heart, it is wonderful to know that as I had predicted you are kickin Mels butt and are scheduled to be on the up and coming NED listing 🙂 🙂
Stay strong my friend, and sending you strength and energy to get r done!!! HUGS ox Jane
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- April 5, 2011 at 3:19 pm
Sharyn!!!! You know…..I knew in my heart of hearts that you have the spirit of a lioness to fight on and you have and you will and I just know that SOOON with the 2 new drugs approved you will be ringing the NED bell and living life large!
Your reply warms my heart, it is wonderful to know that as I had predicted you are kickin Mels butt and are scheduled to be on the up and coming NED listing 🙂 🙂
Stay strong my friend, and sending you strength and energy to get r done!!! HUGS ox Jane
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- April 5, 2011 at 1:27 pm
Well, hello there, Jane! Long time, no see / hear / read — whatever! Great to know you're still loving life and doing well. I'm not surprised — you're such a fighter. I've had a busy year. Brain mets recurred, had a craniotomy, did a round of ipi, had a mastectomy — and all that's only since last August. I'm waiting to hear now if I go back on ipi, now that the brain has been treated. Anyway, the battle goes on, but surprisingly, I still feel great. I had no side effects with ipi, and I bounced back from all my surgeries like a rubber ball. I responded well with ipi for round 1, so I'm looking forward to round 2 to keep up the shrinkage in my lung. All other sub-qs are gone!!
Keep on enjoying your life! We miss you here on the board, but it's comforting to know you're not around for a good reason. Take care!
Hugs
Sharyn, Stage IV
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- April 6, 2011 at 7:51 pm
Hi Jane,
Congratulations and celebrate big time! I don't know if you remember me. I think you were going to come to Fl. to jet ski with MichaelFl, right? I'm almost 3.5 years NED at stage 3C. You have always been a big inspiration for me. I wish you a long life of NED!!
God Bless,
Jim M.
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- April 6, 2011 at 7:51 pm
Hi Jane,
Congratulations and celebrate big time! I don't know if you remember me. I think you were going to come to Fl. to jet ski with MichaelFl, right? I'm almost 3.5 years NED at stage 3C. You have always been a big inspiration for me. I wish you a long life of NED!!
God Bless,
Jim M.
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- April 6, 2011 at 8:44 pm
Hello Jane (and others)…
Words can't begin to tell you how overjoyed I was to read your note. My mother-in-law was diagnosed this week with Stage IV melanoma. She is the fabulous matriarch of this wonderful, huge loving family and we're all very much in shock, worried and trying to remain positive. Your story is one of hope for me and I'm sure will be for our family. As we begin our journey, we'd welcome and appreciate any thoughts, help, guidance and prayers. Thank you for sharing your good news and providing hope for so many!
Sincerely,
Beth Mosher
Illinois
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- April 6, 2011 at 8:44 pm
Hello Jane (and others)…
Words can't begin to tell you how overjoyed I was to read your note. My mother-in-law was diagnosed this week with Stage IV melanoma. She is the fabulous matriarch of this wonderful, huge loving family and we're all very much in shock, worried and trying to remain positive. Your story is one of hope for me and I'm sure will be for our family. As we begin our journey, we'd welcome and appreciate any thoughts, help, guidance and prayers. Thank you for sharing your good news and providing hope for so many!
Sincerely,
Beth Mosher
Illinois
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- April 6, 2011 at 11:37 pm
Jane,
It is so good to see you posting on MPIP. So many people need to hear your message of hope. Of course, I already knew how well you have been doing. Your name comes up frequently especially when people are looking for those who had success with IL-2 and the tips of getting through the treatment.
Congratulations!
Stay Strong
Kathie -
- April 6, 2011 at 11:37 pm
Jane,
It is so good to see you posting on MPIP. So many people need to hear your message of hope. Of course, I already knew how well you have been doing. Your name comes up frequently especially when people are looking for those who had success with IL-2 and the tips of getting through the treatment.
Congratulations!
Stay Strong
Kathie -
- April 7, 2011 at 2:35 pm
What a fantastic thing to read today! Congrats on such a HUGE accomplishment.
I printed off your sheet of advice and took it with me to the ICU when I started IL-2. I made my hubby make sure I was doing everything on it when I started to be out of it!
Kellie(from Iowa) Stage IV on B-raf
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- April 7, 2011 at 2:35 pm
What a fantastic thing to read today! Congrats on such a HUGE accomplishment.
I printed off your sheet of advice and took it with me to the ICU when I started IL-2. I made my hubby make sure I was doing everything on it when I started to be out of it!
Kellie(from Iowa) Stage IV on B-raf
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- April 8, 2011 at 1:53 am
CONGRATULATIONS MY DEAR FRIEND. How awesome is this celebration and I hope it was filled with lots of smiles and laughs. Keep keeping on and please come to the beach.. I have plenty of room and would love to see you. Sending you big hugs. Miss you. Love and Light
carole
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- April 8, 2011 at 1:53 am
CONGRATULATIONS MY DEAR FRIEND. How awesome is this celebration and I hope it was filled with lots of smiles and laughs. Keep keeping on and please come to the beach.. I have plenty of room and would love to see you. Sending you big hugs. Miss you. Love and Light
carole
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- April 25, 2011 at 6:50 pm
Say it Ain't so !!!
You did 56 bags of IL2 ????
I did 8, 6, 4 and 2 and i thought I'd never move again !!
Nastiest thing ever PUT in a bottle !!!
Please contact The Guiness Book of World Records, ASAP,
they have a new page with your name on it !!!!
SUPER JOB, THAT'S NEVER GIVING IN, I LOVE IT !!
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- April 26, 2011 at 12:09 am
Wow, I never though about how many bags I actually had! Thank you for the compliments! I could NEVER give up, I have two wonderful children to keep me hopeful.
I totally agree, it is truly nasty and I had every side effect my doctor told me I would. If I have clean scans next month, I will be almost five years with NED!!!!
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- April 26, 2011 at 12:09 am
Wow, I never though about how many bags I actually had! Thank you for the compliments! I could NEVER give up, I have two wonderful children to keep me hopeful.
I totally agree, it is truly nasty and I had every side effect my doctor told me I would. If I have clean scans next month, I will be almost five years with NED!!!!
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- April 26, 2011 at 12:09 am
Wow, I never though about how many bags I actually had! Thank you for the compliments! I could NEVER give up, I have two wonderful children to keep me hopeful.
I totally agree, it is truly nasty and I had every side effect my doctor told me I would. If I have clean scans next month, I will be almost five years with NED!!!!
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- April 26, 2011 at 12:09 am
Wow, I never though about how many bags I actually had! Thank you for the compliments! I could NEVER give up, I have two wonderful children to keep me hopeful.
I totally agree, it is truly nasty and I had every side effect my doctor told me I would. If I have clean scans next month, I will be almost five years with NED!!!!
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- April 25, 2011 at 6:50 pm
Say it Ain't so !!!
You did 56 bags of IL2 ????
I did 8, 6, 4 and 2 and i thought I'd never move again !!
Nastiest thing ever PUT in a bottle !!!
Please contact The Guiness Book of World Records, ASAP,
they have a new page with your name on it !!!!
SUPER JOB, THAT'S NEVER GIVING IN, I LOVE IT !!
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- April 26, 2011 at 6:42 pm
ahh, finally great news…a miracle!
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- April 26, 2011 at 6:42 pm
ahh, finally great news…a miracle!
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- June 5, 2013 at 11:59 pm
Jane…This is a ridiculously late reply, but was thinking about you today and wondering how you are doing. So, did a quick search on MPIP and saw this was your most recent post. Hope this message finds you NED for seven years. Would love to hear from you!Libby
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- June 5, 2013 at 11:59 pm
Jane…This is a ridiculously late reply, but was thinking about you today and wondering how you are doing. So, did a quick search on MPIP and saw this was your most recent post. Hope this message finds you NED for seven years. Would love to hear from you!Libby
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- June 5, 2013 at 11:59 pm
Jane…This is a ridiculously late reply, but was thinking about you today and wondering how you are doing. So, did a quick search on MPIP and saw this was your most recent post. Hope this message finds you NED for seven years. Would love to hear from you!Libby
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