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Is anyone in the LY2875358 trial?

Phoenix Rising's picture
Phoenix Rising
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Hey team,

So my scans from almost two weeks ago show mixed results.  Some nodules on my lungs grew just slightly, some did not change at all, and the enlarged hilar lymph node is the same.  My oncologist thinks it is time to move on, and wants me to consider the LY2875358/anti- c-met antibody trial.  I think this is the former MDX1106/BMS936558 trial.  The patient information only lists a few side effects, including nausea, diarrhea, accelerated heart rate and possibly enlarged thyroid.  I'd like to hear more about this from anyone in the trial, or from anyone who is just in the know.  Thanks!

Oh, and it turns out that the extra pain I felt in my neck and back, you know, the pain we always think is more cancer.... well I got a new memory foam pillow and guess what-- no neck and back pain.

garym's picture
garym
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Fox was our MDX poster boy until recently switching to IL-2, but I'm pretty sure you know his story, he had very few side effects at all.  Alice's husband John (one putt) is doing well in the MDX/Votrient trial I believe.

Texas_wedge's picture
Texas_wedge
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I wonder whether we'll ever get to know the transfer fee. 

Anyway, I bet his new club is already confident that they're on to a winner.!

Phoenix Rising's picture
Phoenix Rising
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^^ With a history like that, I should collect a transfer fee!

Phoenix Rising's picture
Phoenix Rising
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This trial is a monotherapy, so I would only be taking the LY thing, without Votrient or any other combos and cocktails.  I know One Putt’s story, but I am going to try to go back and read again.  The possibility of no side effects makes me happy and excited.  Votrient and I cannot agree on a good hair color, and the high blood pressure gave me the runaround with some terrible headaches and nausea once.

MDCinSC's picture
MDCinSC
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Lets hear it for memory foam pillows!  Cool

 

Sounds like an investment I need to make!

foxhd's picture
foxhd
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I was on it for about 18 months and had virtualy no side effects. Fatigue some times. But it was soooo easy. In the end it just couldn't clear up some bone mets although it did clear them initially. I say go for it. Other drugs will be available later.

Phoenix Rising's picture
Phoenix Rising
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I paid $24.99 U.S. for the pillow... a pittance to pay for relief from "cancer pain." Cool

Darron's picture
Darron
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I do not think it he LY2875358 and the MDX/BMS936558 are the same trial drugs. The LY (from what I read) is blocking a different receptor. I'm not a doctor and I didn't stay at a Holiday Inn, so I could be wrong.

Phoenix Rising's picture
Phoenix Rising
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I thought that each time the study drug passes a phase, the name changes.... like BMS means it's Bristol Meyers Squibb, and LY is for Eli Lily and Company, or that the name changes based on the sponsor, collaborator, or party responsible for the trial.  I don't really know a lot, but I did save money on my car insurance.

alice124's picture
alice124
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Wow Phoenix - if that's the case, you've taught me something new. (Not that I don't have a lot to learn Embarassed.) I had never heard that take on name changes based on phase and sponsor. Out of curiosity, I googled the two and while BMS936558 and MDX1106 consistently cross referenced each other in writeups, I didn't see the same for the Ly2875358. 

 

LY2875358 ) anti-c-MET monoclonal antibody LY2875358 

BMS-936558 (an anti-programmed death-1 (MDX-1106)

 

But if you have confidence in  your doctor, and he has confidence that this is the right trial for you, ride like the wind to get there. If it is the same trial as John is on minus the Votrient, I think you can anticipate few side effects. (I bet you'll still be able to wear those pretty shoes!) It's nothing like the IL2. Go for it!

Btw, where will you be treated?

 

 

 

 

 

 

Phoenix Rising's picture
Phoenix Rising
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My onc seems more confident and upbeat about this treatment than he was about IL-2 and Votrient.  He said not many drugs have shown much action for the papillary type, but this one shows more activity for my type.  I will be treated at Emory Hospital's Winship Cancer Institute in Atlanta, GA.

Texas_wedge's picture
Texas_wedge
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Phoenix, you do seem to have got yourself awfully confused over the trial you're talking about, over the trials process, and over drug names.  I hope I can clarify matters for you.

The trial that was being suggested to you has nothing whatsoever to do with the MDX-1106 trial Fox was on. Nor is the drug in any way connected - different manufacturers, different chemistry, different drug, different generation of drug also, and different trial stage.  This trial is for what I believe is a third generation humanised monoclonal antibody agent - i.e. some way on from Fox's famous trial drug which is an immunomodulator of the same kind, and it represents a me-too attempt by another rival to cash in on the spectacular early promise of MDX-1106. 

[The various big pharma concerns are always busy trying to avoid any of their number getting the drop on the rest with a runaway success going unchallenged.  To a great extent it's a 'zero-sum game' - one gains at the extent of the others in competing to meet each particular need.  It's a dog-eat-dog world with such mammoth R & D costs that each company is at times at risk of going over the patent cliff as the deadline for their big money-spinners approaches and the legal protection expires which prevents anyone else from producing it at a knock-down price.]

You can get a lot of useful information about the drug which is the subject of the trial proposed for you at

http://www.prnewswire.com/news-releases/lilly-targets-faulty-c-met-receptor-in-cancer-research-studies-presented-today-at-aacr-meeting-145788385.html

When a drug is at an experimental stage prior to trial and (it's hoped approval later on) it's usually given a pretty anodyne label - typically alphabetic - abbreviation of the company's name - plus a number (normally just the next one sequentially in their development lists.  So, for 'your' trial Eli Lilly have called it LY + a reference no.

The history of 'Fox's' drug is that it as developed in East and West.  In the West it was made by Medarex - hence the earlier moniker MDX.     Medarex was bought out by Bristol Myers Squibb who thereupon re-named it for their co. as BMS.  Meanwhile it was developed and sold in 3 Asian countries by Ono Pharmaceuticals who, of curse, labelled it ONO.  Meanwhile, the assignment of an official generic name was in progress and this emerged last year as "nivolumab".  It will continue to be so called as a chemical name but doubtless after it gains FDA approval (it seems highly improbable that it won't!!) the manufacturers will invent brand names for it.  I say names becaus if the present licence arrangement continues it will be going out from separate makers in east and west.

I hope this clears it up for you and I hope you stay well and continue to save money on car insurance.  Laughing

alice124's picture
alice124
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When will I learn there is no need to ask Google when there's Wedgie to ask? Thank you Tex for such a thorough explanation.

Phoenix Rising's picture
Phoenix Rising
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Okay so I have been doing all kinds of Googling to find more info and I log on here and....BAM!  Info!  Thanks so much!  I can see clearly now.

Phoenix Rising's picture
Phoenix Rising
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I just remembered the source of my confusion.
After IL-2 did not work, my onc mentioned an anti-PD1 trial or something, and I thought it was the BMS/MDX trial.  Then we decided on Votrient (which is anti-angiogenisis) because I didn't really want to do a trial.  So when Votrient didn't show much action, he brought up a trial again, and I was thinking it was the same trial with a different name.  Didn't know there were so many trials....
I did know that the LY thing is an anti C-met antibody, but did not recall the previous trial was anti-PD1 and not anti C-met. 

So now that my brain is sufficiently fried (I am working from home and fooling around on the net at the same time), I think I'll have some sangria to celebrate Texas_Wedge's superior knowledge.  Cheers!

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Texas_wedge
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I'm glad if my bit about drug names and trials has been handy in putting you straight, Phoenix. Consider it a quid pro quo for a big favour you did me  a few days ago - in arising from the foam!  Like you, for a while now I've had problems of discomfort/pain whenever I'm not actually being physically active (a bit like the everyday experience of pro wrestlers!) for instance trying to lie down, sitting at a PC or meditating.  It's been a great blow that my GP has asked me to stop playing golf or rowing or doing much at all physically, instead to spend more or less all day taking it easy, with my feet higher than my heart - which happens to be the position of greatest pain for me!

Being a bit of a gadget freak, I invest in all sorts of promising 'solutions' that often get buried under books and papers and more gadgets before they're even unwrapped.  I have several firm foam wedges for alterations to sitting positions; I have a 'knee cushion' (not knee pads for diy, gardening etc, of which I have several pairs, of course!); I have foam pillows which have been helpful in rehab from sports injuries, AND I have a variety of inflatable and foam neck cushions!  Your narrative above inspired me to open up a neck pillowto try it out - you know - the sort of thing sold for being a passenger on a long car journey, a coach, a plane, or train, looking like a bagel with a bite taken out of it.

Having been reduced to a state where I can't sleep on my face, flat on my back, or either side, I've only been able to snatch an hour or two of sleep each night (and I find it near impossible to sleep during the day) on a sofa, in a sort of jack-knife position which I usually get up out of with lower back-ache.   

So, following your success, I've taken to installing myself at night propped up at about sixty degrees, with a pillow under my knees to reduce lower back strain, AND my neck pillow in place, keeping my head off our brass bedhead and preventing my head from turning sideways or flopping.   It's made a huge difference, allowing me to get as much as three hours continuous sleep at times, so I'm much indebted to you for prompting the idea.  I found it bewildering to see the plethora of choices of 'memory cushions' on the market but I may have to delve into them more on the Web - possible new gadget and at the very least a bit of virtual 'retail therapy'.  Wink

Texas_wedge's picture
Texas_wedge
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So now we have another iconic vision to entertain - Phoenix Rising from the foam!

So glad that the new 'cancer pain' was so easily solved.  It's an answer that may help a lot of other folks who have had the same experience of troublesome and anxiety-provoking pains.

Phoenix Rising's picture
Phoenix Rising
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I discovered the "cure" pretty much by accident.  I went on a short vacation this week, and woke up with neck and back pain worse than what I had been experiencing the past couple of months.  It was suggested that I sleep without the pillow.  I tried that and felt much better the next day.  As soon as I got home, I bought the memory foam and yes, I rose from the foam!

angec's picture
angec
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Yes TW, exactly what DHS has experienced, there was no disease progression on his new scans, he was worried like crazy with pains in his belly!  Glad for both he and Phoenix!  Memory foam, schememory foam! LOL

Phoenix Rising's picture
Phoenix Rising
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I have to remind myself from time to time-- People who DON'T have cancer, have pain from time to time. 

Phoenix Rising's picture
Phoenix Rising
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My oncologist told me God must be on my side because there were only 5 slots for this trial in this region, and I got a slot when someone else dropped off the list.  He did not know what caused the other person to leave the trial but he believes they left before they even started the trial. He is very confident this will work well for me.

 

 

 

 

Texas_wedge's picture
Texas_wedge
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Lucky, maybe, but also a very worthy recipient and I'm sure his confidence is well-placed.

Darron's picture
Darron
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When I was asked to either asked to enter the trial, my doctor said something that I think is very wise.

if the trial doesn't provide what we hope for, then we have another decision to make. Do not think of it as failing, think of it as just another decision in the figsexism my Ming it is a decision to fight!

Texas_wedge's picture
Texas_wedge
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Am I losing it more than I realised or were you on something when you composed that message Darron? Smile

Darron's picture
Darron
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I'll edit, I typed on my phone in a hurry and the darn auto spell check makes me seem drunks sometimes!!!!

angec's picture
angec
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Darron, are  you sticking to that story? :)  Yea i hate the phone and ipad for that very reason. One time i was telling someone something innocent and they wound up thinking something entirely different.  

 

Phoenix, correct me if  i am wrong but didn't the Votrient help you at first?  I hope the new trail is going to do it for you! Thank Goodness for TW. Can you imagine what his brain is like when he is feeling good? He is scary and what is even scarier is that i fully understand what he says most of the time!  Alice is right, why google when we have wedgie? Hi Alice!

 

Darron's picture
Darron
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Do not think of it as failing, think of it as a decision in the fight. In my opinion , a decision to do a trial is a decision to fight!

 

darn auto spell !!!!!

Phoenix Rising's picture
Phoenix Rising
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Okay I hear you now!  Trying a trial is a major decision, and definitely a decision to fight!  Thanks!

Phoenix Rising's picture
Phoenix Rising
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Or is it autocorrect?

Phoenix Rising's picture
Phoenix Rising
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The Votrient initially kept me stable (supposedly) but recently showed a small increase in tumor size.  There was no shrinkage.  The fact that I was stable might not have meant the Votrient kept me stable, as I may have maintained stability without it.  But.... we'll never know.

Texas_wedge's picture
Texas_wedge
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Phoenix, I hope I can trespass on your good nature to the extent of getting a brief re-cap of your experience on Votrient.  Can you remind me how quickly you went on to it from IL2 ?  (There are important BP issues relating to that particular transition, as you doubtless know). 

Then, how long were you on Votrient, at what dose level and when in the day did you take it?  What side-effects did you endure and what did the labs tell you about what was happening in your response to the drug.  What scans have you had on Votrient, did they reveal much and what did they demonstrate?

I'm sorry if you didn't get much benefit from it.  The Board did however.  We have quite a few excellent writers here (one or two of whom I think should be or become professional writers).  I look out for, and expect,  some memorable formulations and you and Donna Lee are two people I can always depend on.

So, from your recent experience, I thank you for that real fun throwaway line:

"Votrient and I cannot agree on a good hair color"

Apart from the useful information we get here, there's a lot of wonderful humour (Gary's service in this regard is amazing) and with writing like yours (and there are others here who are well aware of how I value their skills too) this is a very attractive place to come for sheer entertainment.

Looking forward to details of your Votrient experience (if you can spare the time) and I hope your journey goes well in the future.

Phoenix Rising's picture
Phoenix Rising
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My IL-2 experience has become a distant, foggy memory, but as I sat here laboring over my response, I realized my IL-2 Memoir has already been written.  Through the miracle of cut and paste, I am reposting some key statements about my experience that answer your questions.  As always, my hope is that it will be helpful to my other brothers and sisters in this war:

My last MRI before the IL-2 treatment was performed in February 2012, and the two rounds of IL-2 were administered in June, and July of 2012. While I felt like a million bucks after the side effects from IL-2 wore off, the MRI/PET scan performed after the IL-2 treatment showed slight increase in tumor size. 

I began the first dose of Votrient August 28, 2012. The Onc said it is well tolerated in most people, and he told me to work up to three pills (600 mg) per day, and that most people don't take 4/day. So the first couple of days I took 1 pill before bed (someone said bedtime is the best time-- to avoid the nausea), and I immediately felt a little muscle weakness in the legs the next day. I also had a little diarrhea the first two mornings but no problem since then. (Post script-- that changed drastically and Cousin Rhea showed up and never left unless I took one dose of Immodium daily) 

I bumped it up to 2 pills (400 mg), taking them both before bed, will take 3 beginning next Thursday, and will see the Onc the Thursday after that. I have had no other side effects yet, and I hope it stays that way. (Post script-- My side effects increased w/ 2 pills so I did not bump up to 3 pills: I had muscle aches; my feet got just large enough to make my cutest shoes very uncomfortable; my skin lightened; my dark brown hair couldn't decide if it wanted to be gray, white, or copper; I occasionally got splinter hemorrhages under my fingernails; and my blood pressure was elevated to 145/90)

My oncologist allowed me to stay on 2 pills for 6- 7 months, and the lung mets remained stable.  He stated increasing the dosage would only increase the side-effects.  Then I had a slight, incremental increase in tumor size, and he asked me to try bumping up to 3 pills (600 mg).  My blood pressure shot up from a medicated low of 105/65 to 158/95, so we increased the dosage on the BP meds.  My eyebrows became so light they seemed non-existent, my feet hurt even more, and I began having severe muscle cramps in my calves and arches.  I was able to alleviate the muscle cramps initially with Gatorade, then later with tonic water (which worked far better than Gatorade, and with less sugar).

During this time, my labs remained within normal ranges. My white and red blood cell counts were excellent, and my liver function was good. The only thing that was off scale was the preliminary neutrophil, which was low at 38% and the normal range is 43-72.  I don't know what that means, but the onc never showed any concern with it. I will post more specific lab results here, later.

I have been off Votrient a little over two weeks in anticipation of moving to the trial drug.

*************************************************************************************

History

2009-- Dx w/ stage 4 papillary renal cell carcinoma-- Right rad nephrectomy, IVC thrombectomy, lymph resect- mets in 3 of 9 nodes (I think)
2011-- Video assisted thoracic surgery to remove a single mets in right lung
2012-- Multiple mets in both lungs
2012-- Two rounds of IL-2, showed slight increase in subsequent MRI/PET scan
2012/2013-- Prescribed Votrient- 400 mg for several months, 600 mg for 3 months

2013-- MRI showed lung mets increased in size.  Moving to LY2875358 trial

 

Phoenix Rising's picture
Phoenix Rising
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I am still rooting around for other LY2875358 patients, and it the process I ran across some information that indicates this LY-stuff was formerly LA-480, and showed efficacy for gastric cancers.  Here are some random bits of info from a presentation given in 2010.  FYI-- I have sporadic papillary renal cell.

  • LA480, a c-Met antibody with neutralization and internalization properties, inhibits HGF-dependent and HGF-independent c-Met pathway activation and tumor growth.
  • Activating mutations of the c-Met gene have been found in a subset of patients with hereditary and sporadic papillary renal cancer, lung cancer, childhood hepatocellular carcinoma and gastric carcinoma.
  • In addition, cMet activation by an elevated level of HGF has also been described in gliobastoma, breast carcinomas, rhabdomyosarcoma and osteosarcoma.
  • We report here that LA480, a humanized monoclonal c-Met antibody, inhibits HGF-dependent and HGF-independent c-Met pathway activation and tumor growth.
  • These findings suggest that LA480 may be a promising therapy for treatment of cancers driven by ligand-dependent and ligand-independent c-Met activation.

From http://www.abstractsonline.com/Plan/ViewAbstract.aspx?mID=2521&sKey=0eedae21-eb33-4d14-9bc6-740ade1ddcd2&cKey=ddf689fe-56a7-4907-8e4f-36b78e53e7cc&mKey=%7B0591FA3B-AFEF-49D2-8E65-55F41EE8117E%7D

 

 

Phoenix Rising's picture
Phoenix Rising
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I had a long day at the hospital last Tuesday where I had a blood draw, a CT scan, a PET scan, and an MRI. Thank Goodness I had the foresight to ask the nurse to give me an IV line during the blood draw so I didn't have to get poked again for the dye for the scans.

The hospital already has my cancerous kidney hanging around in a jar somewhere so I didn't need a biopsy for them to tell me I have the specific biomarkers sought for the trial. I got another  call Thursday saying I have been officially accepted to the trial.  I will go to the hospital again Monday morning for yet another blood draw, my first infusion will be Tuesday, and more blood draws Wednesday and Friday.

Texas_wedge's picture
Texas_wedge
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That sounds very promising, Phoenix.  Well done on getting into this the trial and good luck with it. 

Thanks for your always cogent and informative postings and I, among many, I'm sure, will be eagerly anticipating regular reports from you on how it's going.

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GSRon
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P.R. thanks for the info and update... Good Luck on the trial..!

Ron

Phoenix Rising's picture
Phoenix Rising
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I just completed my first infusion.  I don't know what I expected to feel, but boy am I hungry.  I am a snacker-- all day, everyday, and I didn't eat much just in case nausea kicked in.  I had some watermelon-cucumber-celery-spinach-peach-pineapple-strawberry juice for breakfast,and that's it. I feel slightly fatigued, but I believe it has more to do with hunger, since I always get a little shaky when I haven't had snacks. 

 

The day started with a bang.  I have to have an IV in each arm, one for the drug and the other for blood draws, and my right arm absolutely hates IVs and refuses to produce a vein that anybody can use.  The nurses called down the "IV Yoda," as they call her, and she came in and found a good spot after the arm had given 2 other nurses hell.  Needless to say, the vein lasted through 3 subsequent blood draws before it told everybody to go to Blazes.  Apparently my all-day nurse was ticked enough that she found another good vein right away and captured it with no problem. 

 

The drug takes about 2-1/2 hours to infuse, vital signs are taken every 15 minutes (interrupting my naps!), and  blood is drawn according to schedule.  In about 30 minutes, I will break for an hour before I have to come back for more vital signs and bloodletting.  I am going out to get some sunshine and a bite to eat.

 

foxhd's picture
foxhd
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Good report. I hope to hell you do well. Have you gotten as tired of needle sticks as I have?

Phoenix Rising's picture
Phoenix Rising
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I got 6 needle sticks today when I only should have only had 2.  I made sure I was sufficiently hydrated but the IV Gods were not with me.

 

Phoenix Rising's picture
Phoenix Rising
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Okay, so it looks like I am the only one in here in the LY2873858 trial.  Infusions are 1 every two weeks, with periodic blood tests in between. The infusion takes 2-3 hours and blood pressure and temp are taken every 15 minutes during the infusion. The infusion day lasts 8 hours. I have had 2 infusions (I think-- who's counting?!)

So far I have 1 and another possible side effect.  I have fatigue, and in the beginning it was to the point my teeth chattered, but now, on the easy end, I will catch myself knitting my eyebrows.  I also have a tendency to grind my teeth.  Overloading on water and green juicing seems to ease it. The "possible" side effect is itching.  I have little itching fits in random areas-- my forehead, my back, my thigh, my shoulder, my hairline.... if it gets too bad I will take a Benadryl tab and nap it off.  Benadryl will also relieve the fatigue but I can't work and take it, lest my boss find me with my face planted firmly on my computer keyboard. My blood tests show a slight drop in red blood cell count but that was to be expected. All other blood results are good and within range. I think I read that I can take iron to help alleviate fatigue.  I had a full prescription bottle somewhere around here and can't seem to put my hands on it.

Other than that, despite the nuisance of repeated trips to the cancer clinic and the constant who-can-find-today's-vein-hunt-and-jab games, it's a walk in the park where side effects are concerned.  I have no nausea, no dia-ree-ers (Hallelujah!), my natural complexion has returned (I was a nice shade of Votrient yellow-orange), and I can see my natural hair color at the roots.  My bp is back to normal, I have no muscle cramps, no splinter hemorrhages, and I no longer feel like I have a baby elephant riding piggy-back.

If anyone else IS here, and in the trial-- but doesn't really want to talk about it..... my advice to you is "don't drink sangria (or red wine or beer or Effen Black Cherry Vodka or any other alcohol--- not even a few SIPS) while taking this drug."  It will give you a mean headache.  That's MY immediate contribution to the trial results!   Cool

Oh, and I almost forgot!-- There's a flat screen TV w/cable and a reclining chair in the infusion space-- and Gunsmoke is on all day. I loves Gunsmoke.

foxhd's picture
foxhd
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My MDX trial really had no side effects worth mentioning. Although the infusion was only an hour, it was an all day affair also. Now if Gunsmoke was offered on their cable system I wouldn't have minded either. I loves Gunsmoke too. I love how Matt Dillion always shows up 5 seconds before someone gets hung or shot. His timing is awesome!

Do well with the trial. We love trials almost as much as we love Fester.

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Phoenix Rising
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Okay, so you know the routine Fox.  Having my own, personal Gunsmoke marathon really does make it easier.  I actually look forward to having a day off from work to watch it. I take good TV snacks to munch on all day. 

And that Miss Kitty is one honest Madam!  I never knew a Madam could be so altruistic.

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GSRon
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Miss Kitty...  I always had a crush on her..!!!  :)

Ron

gatorbob
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I'm a little late finding the site. sorry!

I am presently on this trial. The trial location is the Winship Cancer Center,Atlanta.my results after thirteen months are as follows. No side effects, the cancers have been stabilized since the first scan(11/12). The last scan showed a reduction of 5%. If any of you have questions,I'll make Evert effort to answer.

BC

 

gatorbob
Posts: 21
Joined: Oct 2013

I'm a little late finding the site. sorry!

I am presently on this trial. The trial location is the Winship Cancer Center,Atlanta.my results after thirteen months are as follows. No side effects, the cancers have been stabilized since the first scan(11/12). The last scan showed a reduction of 5%. If any of you have questions,I'll make Evert effort to answer.

BC

 

Phoenix Rising's picture
Phoenix Rising
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Hi Gatorbob!  I wish we had connected sooner.  I am also at Winship. 
Just as I was settling into the study and had gotten past the initial running back and forth for blood draws and the like, I got some bad news on my last visit.

My scans from last week showed a slight increase in tumor size, enough that I am no longer allowed to participate in the study. One particular lung nodule which was not measurable at baseline, became measurable.  I had slight growth in a lymph node, but it was less than twenty percent and not cause for being ejected.  The other lung nodules and affected lymph nodes remained stable.

I was upset to the point of tears, mostly due to disappointment because I truly believed this would work for me.  I was rather enjoying this particular drug, if there is such a thing as enjoyment with this, because it was so much easier than the Votrient where side effects were concerned.  I only experienced fatigue, which went away some time after the 3rd infusion.  I also found relief in going in every other week, packing a nice lunch and some healthy snacks, taking the day off from work, watching Bonanza, chatting with the nurses, covering up with a warm blanket, and drifting into a nice nap.  I should have known something was amiss when Bonanza didn't come on that day.  Hmph!

The oncologist discussed that we would go back to the Votrient-type drug in a couple of weeks.  I didn't hear the name of the drug- I just kinda heard blah-blah-blah at that point.  He did, however, tell me that I am by far his healthiest patient with Papillary RCC.  Okay.

 I left and went to have a pedicure, then went a wellness spa for a good steam and some sauna time.

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alice124
Posts: 877
Joined: Mar 2012

Phoenix - Wow, that really sucks. But I'm proud of you. You did what any great fighter does. You had your equipment primed. In your case, it was a pedicure readying yourself to kick in style during the next round of whatever treatment your docs prescribe.

I know you're disappointed; I am too for you. But it says something about you to walk away from bad news from your docs right into the salon. I really like that about you. That tells me you're not backing down for a minute and--those of us that support you--aren't either. We'll take it on the chin with you knowing the harder you fall, the higher you'll bounce. 

 

 P.S. Gator Bob - Hope the trial continues to work for you. Keep us posted as trials are always of great interest. 

 

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Thanks, Alice.  As usual, I just move on. We are going to find something that works.

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

the study also after some small tumor growth. It was upsetting and I think premature. All I know now is that if immunotherapy is going to work for me, I have given it my best shot. You are right. We just move on. Right now I have no plan B.

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Foxhd, Even though it was done by the standards of the study, I felt the scan was done to soon and did not give the medicine a chance to work.  It was quite upsetting. My Plan B-- If I keep doing what I've been doing, I'll keep getting what I always got...  it's time to do something else and get something else.  I just have to figure out what that is.

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