Slight detour on the road to Ipi trial (long)

Posted By
8/15/2010 4:24pm
View other posts by
Activity
Replies: 16
Hi everyone,
I sent this out as a personal email to many of you, but I wanted to share with my whole MPIP family.
 
In my last update, I was expecting a call any day to go start the Ipilimumab trial in Montreal. Well, the call still hasn't come. Apparently there's some bureaucratic hold-up with the IRB (Internal Reserarch Board). Dr Mihalcioiu had decided on July 15 that he would use my lung and breast tumors as a baseline to measure progress, so on July 28 I had an ultrasound and x-ray to record the starting point, assuming we would start within the next few days. Everything seemed in order.
 
However, within the next few days, I developed a huge golf ball sized lump on the side of my breast and it was quite painful. My family doctor, Marie O'Dea, put me on an antibiotic and pain killers on Aug 4. The next day, the lump broke open and discharged a lot of the infection, and I've been having to continue to drain it twice daily ever since. (Talk about gross!!!) I saw my oncologist, Dr Rorke, and radiation oncologist, Dr Norman, on Aug 9, and both recommended a mastectomy. (I had already emailed Dr Giacomantonio in Halifax, and that was his recommendation as well.) Apparently, the centre of the tumor has died, and the necrotic (dead) tissue has become infected. The only way to get rid of it is to do a mastectomy. A lumpectomy is not an option, as the tumor mass has now taken over more than half of my breast, and is over 10cm in diameter -- bigger than a baseball.
 
So on Aug 10, I saw my surgeon, Dr Pace, who concurred with the other doctors, and put me as high priority on his OR list. Tomorrow (Monday) I will have my pre-op tests, and the mastectomy will be done on Thursday. He will also excise most -- if not all -- of the 10 tumors on my leg. They're not causing any trouble, but if they're gone, I won't have to worry about them.  I might as well get the best bang for the buck on the general anesthetic.  I'll be kept in hospital overnight, and discharged the next day.
 
I've been trying to come to terms with the mastectomy. I don't mind the fact that I have to have surgery, and if it was just to have another chunk taken out of my leg, it wouldn't bother me a bit. But the thought of losing a breast is a very personal thing for a woman, especially with my generous endowment.  But the alternative sucks, so it's a no-brainer, and I just have to suck it up.
 
Meanwhile, the way things are going, I expect I'll have the surgery and be fully recovered by the time Montreal gets its act together with the Ipilimumab trial. So that treatment is still on the horizon, just delayed for a bit. Say a prayer for me Thursday.
 
Hugs
Sharyn
Stage IV
 
WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

Wow, talk about a detour!

I'm sorry you are having to deal with having a mastectomy! I had an unilaterial one in 2008. I chose to have my reconstruction started right away, having the tissue expander placed immediatly after the mastectomy.  It's definintely a strange thing to wake up to a non-existant chest(even if it is only one-sided) but for me the tissue expander helped, not quite sure why. Maybe because it was inflated a bit so I didn't look quite so uneven? I came home with one drain(kind of a pain in the neck, if you ask me!) that was taken out after 10 days? Shower, finally! lol
Nice that the tumor is dead but a pain to deal with anyway! I'm glad they are able to excise the leg tumors at the same time!

Good luck for starting the IPI trial after you recover from your surgery! Will be thinking about you.

Kellie(from Iowa) Stage IV STABLE

Cancer Sucks. I'm so not done kicking cancers ass!
I have a lot of life left to live

Wow, talk about no fun!  My girl friend that had a double masectomy said the actual surgery wasn't too bad.  She hated her drains, as we all do.  But she have a very hard time with her reconstruction.  But she looks knock out in a T-shirt now

 Wishing you good health and a speedy recovery. 

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

Hi Sharyn

i feel for you so much but still believe you will look back in a few years smile and say it was all worth it. You have to believe that you and your treatments are working together to beat this disease, you said it yourself there is necrotic tissue in the tumor which means you've been killing Mel!  

I am looking forard to hearing of your positive response when you start Ippi and maybe once and for all hit Mel for a 6! (the Cricket equivalent to a Home run)

best wishes

James

Hi James,

I'd love to believe that I'm killing mel cells spontaneously, but that's not why I have necrotic tissue. First of all, when a tumor gets to a certain size, it runs out of its own blood supply, so the centre dies, and the outer mass continues to thrive off healthy tissue. Also, I had radiation to my breast last December, so the radiation may have killed some of the tumor too. Either way, it's just sitting there, rotting, and causing a lot of toxicity.

Hugs

Sharyn

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

Another thought on breast reconstruction in case you are considering it.  They are now saving the nipple, rather  than reconstructing it so ask about that.  It's a relatively new proceedure and from what I understand saves a lot or pain.

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

They can't save the nipple, as it is involved in the tumor. I've been having discharge from my nipple since December. Then I had it radiated, and that slowed it down for awhile. But it picked up steam again in the past month. Thanks for the suggestion though.

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

Sharyn, very sorry to hear that you have to go through all of this.  I never thought I would ever feel the same when they were telling me I was going to have my lung removed.  Here I am 4 years later, and I hardly even think about it.   Wishing you a speedy recovery, mentally and physically.  

Melanoma can take some things away physically, but you are still going to be the same person.

Good Luck and God Bless

John

Insert Generic Inspirational Motto Here

Sharyn,

 

I got your email but just wanted to respond here.  You are an amazing warrior and have been thrown so many curve balls. I'm so sorry and can certainly understand your dislike of having a mastectomy.  However, with all the doctors in agreement, you know that's what needs to be done.  I know you've often mentioned your supportive family and I hope you can all support each other with this.  I know you have so many other things going on but am wondering if there is an organization like Reach to Recovery in Canada.  I know they have helped so many women (and an occasional man) who has had a mastectomy.  The volunteers have had the same surgery and can offer support, understanding and hope.

You'll be close in my thoughts and prayers, Sharyn.  I am so very sorry and just hate melanoma.

 

Stay Strong
King

Stage IV 7/05 Liver mets

Hi Sharyn,

I am sorry to hear your latest news and hope your surgery goes well. You are an amazing person and I hope you make a speedy recovery so you can start the trial when you are well enough.

Janet 

Hi Sharyn, So sorry about the delay.

Buddy had a few delays along the way to IPI..But we never gave up..He had his second reatment in Philly last Tuesday.  Nothing worth while is easy.  I hoping this will be the drug that works for Buddy and the dryug that will work for you also.

Stay strong,

Nancy

 

 

 

Back in 2006, I remember driving around and around the parking lot thinking, "I'll never been the same again" and this was just for a WLE/SBN...my first set of scars...scar count now is 27 and counting, having another surgery on Aug 31 and it wont surprise me if my surgeon goes for a mastectomy,  he is very aggressive, he hasn't said so yet but we still have a week to go.

My thoughts and prayers will be with you on Thursday...lots of love & hugs for you and for a quick recovery too. love, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Sharyn,  I'm sorry to read this post of everything you have been going through.  It sounds as if you have a great attitude about it all and your Drs. are doing everything they can.  Praise God!

Nancy D

Hi Sharyn,

What a winding road you are taking indeed!  You have an incredible spirit and are doing everything you have to do.  You have many people pulling for you and praying too.  Sending my best wishes and prayers for Thursday to you and Jim. 

Jim in Denver

 

Ever since I have been on this board you have always inspired everyone here so let me inspire you. I know that you will push foward doing what needs to be done with your head held high as you have always done!

Best wishes with everything. Prayers for you today, tomorrow and on Thursday.

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

Sharyn,

 I am so sorry that you are having to go through this. You are in my thoughts and prayers. As you all are that are dealing with this beast along with the caregivers/ families. Keep your chin up. We are all pulling for a speedy recovery. Take care

Laura

My prayers are with you!  You don't deserve this!  Please keep us posted.