Tagged: Yervoy Opdivo
July 14, 2015 at 8:43 am #7362AnonymousInactive
Who da thunk that almost a year ago I would get a diagnosis of stage three melanoma. Certainly not me. My name is Ramona, I am married to the most wonderful man and we have been blessed with two beautiful daughters, 22 and 26 years old, and three small dogs (I’ve been banned from looking at rescue sites) and last August I was diagnosed with Stage 3 nodular malignant melanoma. I’ve had two surgeries, 25 rounds of radiation and finished my month of high dose interferon. Due to the onset of pneumitis I have been unable to begin the subsequent 11 months of interferon. I consider this a small blessing as I was able to regroup both mentally and physically so right now I am feeling great which leaves me very apprehensive about staring interferon over. But the party had to end sometime:(. Unfortunately I did not qualify for the one drug trial but would I have really been willing to throw the dice and give up my guarantee of increasing my chances of survival by a mere 10% for a flip of the coin in the hopes I would get the drug and not the placebo? Not so sure but it would have been nice to have had the choice. So I will begin the interferon again, cross my fingers and hope that the side affects aren’t nearly as bad as with the high dose. Fingers crossed, loving life too much.
Currently there is no one else in Ottawa undergoing the same treatment for me to share, commiserate, encourage which makes it difficult sometimes. I’m blessed with some really great friends and my employer has been AMAZING!
As I say often, now is not my time as I have places to go, people to love, and life to live.
July 14, 2015 at 11:26 pm #7377AnonymousInactive
Hello there and welcome to the site Ramona! You have a great attitude and outlook and I think that alone helps you in standing up to your diagnosis and the challenges melanoma has already presented for you. None of us wants to be here, but we certainly are grateful to have such a forum available in sharing experiences and providing support to each other.
Just heading to bed but saw a new email from MN so thought I’d take a moment to read on. I will come back to you again but for now as you prepare to start Interferon once again I wanted to wish you well. I can imagine disappointment, frustration and now perhaps a degree of anxiety in beginning once again. I too am Stage 3 and have completed the one month of high dose and 11 of the low dose. I think the first month was the most difficult but certainly there were some days during the low dose months that were challenging. The worst of which I found was fatigue. You just have to learn to rest when needed and of course remember to drink lots of water.
You certainly have already been through so much having also had 25 rounds of radiation. I have just celebrated 2 years post completion of Interferon. At the start of treatment one year seemed unimaginable but as life does, it went fairly quickly! Just as you say the key is in continuing to make the best of life and enjoy as much as you can as you go!
Keep in touch and know you can message any time! Thanks for sharing your energy and positivity, you bring strength and much encouragement to others in dealing with their own diagnosis and finding a way to go forward!
Take care and thank you! 🙂
July 22, 2015 at 8:11 pm #7443AnonymousInactive
Hi Cathy, so good to hear from you and to know you went through the the same treatment and managed to complete the whole 11 months. The fact that you have been two year NED is also encouraging.
With the inevitable start of treatment I decided to head out west to visit my brother and his family. It is nice to get away from all the reminders. We are at the cabin and just saw a bear wander by. Way cool!!!!!!!
Would you mind me asking me how you discovered your cancer? Does there ever come a time where you stop worrying about the cancer coming back? I try not to obsess but it can be difficult at times. I’m happy that I have you and this network. Treatment can be lonely.
July 23, 2015 at 10:42 pm #7448AnonymousInactive
Hello Again Ramona! I don’t mind your asking how I discovered my cancer at all. Actually, mine was discovered by someone else. A massage therapist noted that I had an unusual looking mole or “something” on my back between my shoulder blades and said it had broken open while I was on her massage table. I can’t tell you how thankful I am for her having mentioned it. I took flowers to her and needed her to know what a good thing she did in talking with me about it.
I could lie and say you will stop worrying about it in a couple of years, but honestly I don’t think our worry will ever go away but you will learn to go forward in living a full life, thinking of all that you can enjoy and wish to accomplish rather than what you might not have the chance to. I think for our own good mindwise we have to think positive and enjoy all that we can, as the alternative will surely make you crazy. Remember all the wonderful people you wish to spend time with and enjoy all of lifes BEST with! Make plans, have fun and LIVE!
Trust that I TOTALLY understand about trying NOT to obsess about it, but it is difficult and I feel like I’m so “keyed” into any new pain, bump, etc. since all of this because I fear missing something, but can’t let “fear” rule my life and don’t want to allow that either!
I’ve just had a second biopsy since the diagnosis; one just a few months ago and await the results, but happily somehow I do feel like this will be a negative result because I am thinking more positive! If it should be a positive result, well, we’ll just have to take one day at a time! I will fight the fight and live while doing so should that be what I need to do…I have way too much I want to do!
I’m glad too Ramona that you found your way to this site! I have connected with some wonderful people here, who have been very supportive, helpful, encouraging and whom have allowed me to support them as well and sometimes when we are in a dark place ourselves it is good for us to help someone else in finding “light”amid fear and uncertainty; even when we may not realize in doing so we are helping ourselves!
Keep in touch as you go forward and while of course you want to stay strong know that some days we just don’t feel strong and need to allow ourselves to let down our guard, let out the many emotions we may feel and lean on that shoulder when needed. Treatment can be very lonely even when we have people around us. It may be that you simply need to vent/share with someone who has been through same/similar experiences and know they DO understand! Remember to seek what makes you happy, laugh lots and keep enjoying the little things! Take care of you! 🙂
April 17, 2016 at 9:42 pm #9390AnonymousInactive
Hi Cathy, Oh my goodness where has the time gone. I hope all is well with you and that you continue to fight the good fight.
A lot has happened in the last 9 months. I managed to do seven months of interferon, boy you never realize how horrible you feel until you feel better. I had a regular PET scan in February which showed that the cancer had spread to my right lung and my neck. We have decided that surgery will be saved as a last resort so I will be staring a clinical trial combining Opdivo and Yervoy on Wednesday. Hoping this will do the trick. Otherwise I have spent the last couple of months recovering, traveling just plain enjoying life. I am sooooo happy spring has finally arrived. Sending you positive vibes.
April 17, 2016 at 10:43 pm #9391AnonymousInactive
Wow, Hello Ramona! Looking at the dates I see what you mean by “where has the time gone”! Yes, Interferon is a long old road to travel and you did very well at 9 months! I am sorry to hear the cancer has spread but happy to know there are some options available to you. I will be crossing my fingers for you as well, keeping you in my thoughts and will do so with only positive thinking for you! Yay for your “just plain enjoying life”, often a challenge even when everything is as close to “normal” as it could seem having gone through all that a diagnosis of melanoma can present. With results of your PET scan I understand that would up the ante in more challenging daily thoughts. You have a fabulous spirit and that will help you continue to make the most of life with the challenges presented! Today was a fabulous day and it seemed to be THE DAY, that spring TRULY arrived! We enjoyed breakfast on our back deck…oh yes, it seems it has been soooo very long coming this year! I’m doing well, a couple of things nag at me but will be seeing my dermatologist in June, have followup care for a cyst in June, then in August see my oncologist once again. Recently my surgeon released me from his care after 4 years of NED, which was nice on one hand but on the other I thought it was good to have him as part of the “check-in” team. I’ll focus on the positive this presents. Good to hear from you Ramona…take care of you and keep in touch! 🙂 I hope the clinical trial works out very well for you!
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