Finally started Ipi!!!

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9/24/2010 8:28am
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Replies: 13

Well, it wasn't as smooth sailing as I had thought. After having all the preliminary tests and scans last week in Montreal, my Dr there called me last Fri to tell me my hemoglobin was too low (7.6), and if I didn't get it up within 5 days, I wasn't eligible for the trial. So I had bloodwork done locally on Fri afternnon, hemoglobin was 8.0, but still not high enough. So on Monday I went in to the Cancer Centre to have a blood transfusion -- 2 units. Then, on Wed, I flew back to Montreal on a wing and a prayer, hoping that my hemoglobin had risen enough. Good news, it was up to 10.8, so on Thurs, we started Ipi at 11:30. I had no adverse events, walked back to the hotel afterwards (20-25 min walk), then went to the airport and flew home late last night. This morning I feel fine, and I hope it continues. I've waited a very long time to start this trial, with lots of detours (gamma knife, genetic profiling, mastectomy, etc), so I'm delighted to be finally underway.  I'll update as things move forward.

Hugs

Sharyn

Stage IV

ILP, LND, PV-10, hysterectomy, GM-CSF, WBR, SRS, mastectomy, and now Ipi.  

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.

Marshipops - (9/24/2010 - 8:35am)

Hi Sharyn

I'm new here and just read your profile.  Jings!!  You've been through so much!  I really hope that the Ipi works for you, good luck!

Marsha x

Hi Sharyn

so glad to see you have started. Sending you lots of positive energy.

best wishes

James

ValinMtl - (9/24/2010 - 11:14am)

Round one done..now on to round two!!!  Let's get that nasty beast and kill it dead. Val

Live Laugh Love
Nothing is worth more than this day!

Sharyn - (9/24/2010 - 11:40am)

I'm with ya, girl!  See ya in October!  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.

good luck girl!

dian

Anonymous - (9/24/2010 - 7:52pm)

Hey Sharyn,

 

Happy you are underway??/ I am thinking about IPI. Have you had any side effects??? What are you doing for them??

Sharyn - (9/24/2010 - 9:45pm)

No side effects so far, but it's only been 36 hours. I feel totally normal, healthy appetite, sleeping well.

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.

Jim M. - (9/24/2010 - 8:30pm)

I'm glad you're finally on Ipi! I pray you are a responder.

God Bless,

 Jim M.

Sharyn, that is fantastic!  I really hope you do well on it.  You have waited so long.  Keep up that hemoglobin too!

 

ellen - dad's daughter

King - (9/24/2010 - 9:24pm)

Sharyn,

 

You have a great attitude and have been fighting, fighting, fighting.  Really hoping that Ipi is your answer and that the side effects are minimal.

 

You are an inspiration!

 

Stay Strong

King

Stage IV 7/05 Liver mets

Jim in Denver - (9/24/2010 - 10:35pm)

Hi Sharyn,

I am really happy to see your post - really good news!  You have been really strong in going through so many obstacles to get to this point, so I am sending lots of positive thoughts to you (and Jim too) for your starting the Ipi treatment.  You are truly an amazing lady who inspries others to keep fighting, and with true grace and humor. 

Best,

Jim

 

 

Bonnie Lea - (9/25/2010 - 8:19am)

Oh this is great to read Sharyn.  You are my very own   Fighting Newie  and I am always sending up thoughts to God and everyone who listens.

Continue with the positive attitudes.  We are sort of kindred sisters in a off way.  (cept well you got one left I have none) hahah

Love Bonnie

Just Keep on Hanging In

makedoandmend - (9/25/2010 - 8:15pm)

that is awesome that you got your counts up in the nick of time!  I have a good feeling that all of your hard work is going to pay off!

-pat on long island