Update on kevin from Atlanta

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9/11/2010 11:09am
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I got my scans after taking 4 treatments of Ipi. All of my mets grew, lungs, brain, along the spine and esphogus, intestine ect. Two new ones, one at where the brain and spine meet and thyroid. I will wait six weeks, get new scans to see if I am a late responder. I still do not have a plan B, there really isn't anything out there that I am eligable for or perks my interest. I meet with my reg Onc on Monday. The next six weeks I plan on working on my pain. My knees and overall back give me pain 24/7. I have a hard time taken opiates, Ibpruphen just takes a little edge off. I told the onc office to order bloodwork for the thyroid to see if it out of wack. I might ask for a fine needle aspiration of the thyroid just to get a biopsy since the last biopsy didn't get a great sample. I plan to use for mutation testing.

 

I must give kudos to Ft Sanders hospital and Thompson cancer center in Knoxville, TN. I got a bone scan, ct scan and brain MRI within 5 hours and the results the next morning.

 

Professional patient

Stage IV 

 

Janet2 - (9/11/2010 - 11:50am)

I am sorry to hear the results of your latest scans after taking 4 treatments of Ipi and hope you are a late responder.

I hope your meeting goes well with your oncologist on Monday and that something can be recommended to help with your pain. Also, I hope you can be offered some other form of treatment if you decide to pursue that course.

Janet 

I've had 3 ipi infusions to date, but when I was discussing the trial, my oncologist told me several times that it is not unusual for tumors to increase at the week 12 scan.  You may still be responding, so hang in there!  This might be what your oncologist will tell you on Monday.

There seem to be so many clinical trials out there for melanoma now.  Perhaps one will start to interest you over the next 6 weeks.

I love it when hospitals can get things done quickly!  Time is precious to us, and 3 weeks here and 2 weeks there is hard to take.

Sorry about all your pain.

Kevin, I'm disappointed to hear that you have not had a good response with ipi as yet. I do hope that you are a late responder and it happens soon. I start ipi on Tuesday and my oncologist doesn't expect to see much change happening at least until round 3.  The key right now will be to find the right solution for the pain..24/7 is not acceptable. Glad you are working on that. I have pain now and again and take supeudol when I need a break from it, so far it helps.   Take care, Val

Live Laugh Love
Nothing is worth more than this day!

Kevin,

I admire  your toughness a great deal.  If you don't mind I had a quick question. Forgive me if this is a stupid question, but am just diagnosed and very new to this..Is the pain that your experiencing from the mets or is it a side affect of the treatment?

-pat on long island

Pat,

I had these pains coming into Ipi treatment.  They started about four years ago when I was Interferon. I am unusual in that regard.

jag - (9/11/2010 - 1:31pm)

Kevin, 

I am very sorry to hear this.  Definitely have your pain medications addressed.  I will say a prayer that you are a late responder.

John 

Insert Generic Inspirational Motto Here

Kevin

So sorry to hear about the results of your scans.  But.....Ipi is known to do this, increase in size the respond.  We know exactly how you are feeling only difference is John did not have any new mets just increased size.  He feels like he is not going to respond because he still feels so bad going into week 20.  I am suprised you will be getting more scans in 6 weeks.  We have to wait 12 weeks and really was not happy with that but that was the plan.  We will go back to Knox. Oct. 5th for scans and Oct 6th for results.  Yes Kudo's to Thompson Cancer SURVIVOR Center.  They are very quick and effecient with thngs.  We, like you do not have a back-up plan yet.  Did Dr. Grossman recommend anything to you?  How was your bloodwork?  LDH? total lymphocytes?  At one time we thought about going to Bethesda ???  I hope you find something to help with your pain.  John continues to take his Ibuprifen and it does a decent job taking care of pain but it is soo hard on his stomach.  He does not like the Hydrocodone.  Maybe you could check into a fentanyl patch or something that is more slow/continuous release for round the clock relief.  Best of luck and hopefully you will be a "late bloomer" as well as my husband.  PLease keep us updated.

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Kevin here is something you might be interested in.  Gives a glimmer of hope.

 

 


Response to Investigational Ipilimumab Observed Among Patients With Advanced Melanoma: Presented at ASCO

By Ed Susman

CHICAGO -- June 5, 2008 -- More than one-quarter of patients with advanced melanoma attained clinical benefit when they were treated with the investigational agent ipilimumab, researchers said at the American Society of Clinical Oncology (ASCO) 44th Annual Meeting.
 

"We think that treatment with ipilimumab gives patients hope that we really have a new treatment that works," said Steven O'Day, MD, Angeles Clinic and Research Institute, Santa Monica, California.
 

Ipilimumab is a fully human, monoclonal antibody directed against CTLA-4, a key negative regulator of T-cell response to tumour-associated antigens.
 

Dr. O'Day said the drug has been used in treating more than 500 patients with advanced melanoma. Phase 3 trials of first-line ipilimumab with or without chemotherapy in patients with melanoma are now underway.
 

In their open-label, multicentre study, Dr. O'Day and colleagues enrolled 155 patients with advanced, unresectable, stage III or IV, malignant melanoma. The average age of patients was 59 years, and 52% were men.
 

About 5.8% of the patients achieved responses and about 27.1% attained disease control. Median overall survival was 10.2 months, and 1-year survival was 46.7%, Dr. O'Day said in his oral presentation on June 2.
 

Patients received ipilimumab induction dosing at 10 mg/kg every third week for 4 cycles and then received maintenance dosing every 12 weeks beginning at week 24.
 

Grade 3 or 4 immune-related adverse events were reported in 21.9% of patients; gastrointestinal side effects were the most common adverse event in 8.4% of patients. These immune overactivation effects correlated highly with long-term survival, Dr. O'Day commented.
 

He noted that these results were "remarkably consistent" with 2 other pivotal ipilimumab trials reported at this meeting, all showing ipilimumab treatment stopped tumour growth in about 30% of patients in the first 12 weeks, followed by tumour shrinkage. Another 10% to 20% of patients progressed early and then developed late responses.
 

"With immunotherapy, best overall response rate does not appear to capture ipilimumab activity fully, so overall survival should be used instead, to evaluate the drug's efficacy," Dr. O'Day said. "With immunotherapy you have to 'build up your army,' which takes about 12 to 24 weeks. So it's important to recognise that survival is the most important endpoint and that early progression does not mean that patients are not going to benefit."
 

He noted also that in about 30% of patients there is a plateau effect such that long-term survival has been anywhere from 10 to 15 months, as compared with 6 to 9 months typically for high-dose interleukin 2 (IL-2).
 

While ipilimumab is given as an outpatient treatment, IL-2 is given in hospital or often in the ICU because of its acute side effects, which do not correlate with better outcome, Dr. O'Day said.
 

Funding for this study was provided by Bristol-Myers Squibb and Medarex.
 

 

[Presentation title: Efficacy and Safety of Ipilimumab Induction and Maintenance Dosing in Patients With Advanced Melanoma Who Progressed on One or More Prior Therapies. Abstract 9021]

 

 

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Diana2 - (9/12/2010 - 11:48am)

Hi Kevin, I'm sorry to hear about your scans. I just wanted to let you know that you're not alone. My husband just finished cycle 4 of 3 mg Ipi compassionate use trial also. On Fri, we found out his 12 wk scans show "everything's worse". I was too stunned to ask any questions. He's had so many side efffects, was really hoping for at least a little positive news... His 2 options at this point are to do nothing or start biochemo which he did yesterday. I know this won't be any piece of cake but I think the theory is to go in fast with a whole new set of drugs his body hasn't been exposed to yet. A long time ago his dr. said toxicity is sometimes what it takes. We'll know quickly like in 2-3 wks if it helps. Good luck to you with plan B & your pain mgmt. I just thought I'd pass on our similar situation & what we're doing. I can only hope you & my husband & Linda's husband are all late responders! Linda, thanks so much for posting the article. Hang in there everyone & keep in touch. We'll get through this together! -Diana 

Diana

Where is your husband doing his Ipi trial?  Did they not want to take a wait and see approach, or was that your option to go ahead and start biochemo.  What is the biochemo anyway?  My husband too had many side effects including the hair depigmentation, and vetiligo both were suppose to be a very good sign of response.  We are not giving up on Ipi yet... now ask me in about a month and we might have changed our minds.  I wish your husband lots of luck as it is still early in the game, and pray for him to be a responder to this.  Keep in touch.  It really helps talking with others going through the same trial as us.

 

Linda/Kentucky 

P.S. btw.. what side effects did he have?

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Diana2 - (9/13/2010 - 3:57am)

Linda, Steve did the Ipi trial in Denver at Univ of CO. His options on Fri were to do nothing or biochemo. We're not very patient when it comes to waiting so chose biochemo in the meantime. The theory is to come in at a new angle with all new drugs his body hasn't seen before. The treatment is very toxic & includes 3 chemo drugs (Dacarbazine, Cisplatin, Vinblastine) & 2 immume stimulating drugs (Interferon, IL-2). Response rates are low but usually a very durable response for those responding is what I've heard. His side effects to Ipi were all the common ones - fatigue, rash, nausea, headache, chills, aches, fever. All were on & off. Fatigue was the big one. No hair depigmentation or vetiligo. My best to you & your husband. Please keep in touch & stay positive. We'll fight this battle together! - Diana  

lhaley - (9/11/2010 - 11:00pm)

Kevin,

I am so sorry to hear about your disease progression.  Hopefully they will find you are a late responder. 

Sending hugs,

Linda

Sharyn - (9/12/2010 - 4:02pm)

What a bummer Kevin! Not just for you, but for me too. I leave for Montreal tomorrow to do the preliminary work-ups for Ipi, and I start on the 23rd. Reading your results took the wind out of my sails, as I had been quite hopeful. But I guess we all have to keep the realities in the forefront. Nonetheless, I do hope you're a late responder. Hang in there, Bud!

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.

joy_ - (9/13/2010 - 10:24am)

I'm sorry to read this news but hoping that you are just a late responder.