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Trial in Nashville MPDL3280A (PDL)

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

It's been a long 3 days. I arrived home about 2 hours ago and I cannot tell you how good it is to be here! I want to share my experience with you, but I don't want to get too detailed and bore anyone. Suffice it to say that the scans that were taken on Tuesday showed no NEW growth anywhere, and the spots that they already knew were there have grown, but minimally. That was really good news to me, although I did find out that my left adrenal gland has something suspicious on it that is now worth mentioning. I suppose all this is moot, because the drugs I received are going to blast everything that doesn't belong in me. On Tuesday, after LOTS of blood draws and before the scans, I was told that my dosage would be 10 mgs/kg body weight. That sounded right to me, and I know there are others getting that dosage. Imagine my surprise this morning when they were explaining the procedure and they casually mentioned I will be receiving 20 mgs/kg body weight. I freaked out a little and all of a sudden there were 4 study nurses in the room with me trying to tell me that it was all right, and if I didn't want to do it, they wouldn't try to convince me. Damn...I went all the way to Nashville, and I wasn't leaving without the damn medicine! So I just said okay, gimme what ya got. And they did! It was infused over 1 1/2 hours and they took my vitals every 15 minutes. I had absolutely no side effects, except that my blood pressure was a bit lower, but that was to be expected. Since I had no issues, next time (in 3 weeks) they will infuse it over an hour, and eventually over 30 minutes. I've gotta say that I really felt all right. However, at about 5:00 this evening on the way home, I told my husband I was sure I had a fever. I took 2 tylenol and when I got home I took my temperature. It was 100.8...not good, but after another 30 minutes and a fever breaking sweat I am much better and my temp is at around 99. I will call the nurses tomorrow and ask about it. I apparently am in an expansion group and the drug companies are now upping the doses to 20mgs. I think it is important to mention that SCRI has 3 spaces for participation in this study and I am the only one. Are there two people out there who are interested? The key is to have the receptor for the PDL drug. This was determined by sending a sample of my tumor to the drug company where they tested it and determined that I am a receptor! A one out of three chance.

In any event, I am glad to be home and must tell you all who prayed for me and thought about me that I felt all that energy. And that is what got me through the last few days. I want to be a survivor and I want to take all of you along with me! The support in this group is astounding and humbling. Thank you all.

Love, Paula XO

I am alive
Posts: 229
Joined: Jul 2012

It's such a long strange journey that we're on. And yea, coming back home after these hospital visits is an exhilerating experience, isn't it? LOVE the everyday-ness of every day. You're gonna rock that PDL, Paula! I'm glad the first infusion wet well. Fingers crossed for the future. Glad to hear you can feel all that positivity coming your way from the wonderful folks on this board. Aren't we all lucky to have found each other? Keep smiling!

MedScanMan's picture
MedScanMan
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Joined: Jul 2012

So glad your trip went as well as it did for you and that you tolorated the Meds well. One more super fighter on this board. Congrats.

Jeff

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

No more than we expected of you - you're a winner. Just you show everyone that the new dose is the right one. I guess you'll stay in close touch with the trial team to monitor your experiences in the interval before the next infusion?

Being the only one on the trial there is fitting - you're special!

[P.S. your info is so useful. My Wife has just commented that she thinks we should try to find out whether I have the necessary marker.]

pjune127's picture
pjune127
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Joined: Dec 2011

The nurses at Tennessee Oncology called me first thing this morning. I told them about the fever and they said it is totally expected and as long as tylenol relieves it and I show no other signs of infection, there is nothing to worry about. In fact, the fever is gone and I haven't had any tylenol since last night at midnight. They do want me to call if I have any questions, and of course I can get any emergency tended to by my local oncologist, but otherwise it was pretty much, "See ya in three weeks!" I say check into it T. I'd love to have your company.

alice124's picture
alice124
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Joined: Mar 2012

Know it has to feel great to be home and we're all glad to have you home.

While it sounds like a big dose, the doctors are obviously confident you will be a responder and want that response just as fast as you do (well almost). Proud of you Paula!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Paula,

Great to hear from you and even better that all is well!! You are now elevated to Rock Star status right up there with fox and one putt (Alice's John), I pray your results will be at least equal to theirs.

Rock on,

Gary

foxhd's picture
foxhd
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Joined: Oct 2011

:):):):):):):):):):)My attempt at smiles! I bet the fever was due to your body going ape **** on all the invaders. It's alot for ones system especially at double dose. Maybe means it will work twice as fast. Maybe thats what they are thinking and hoping for. Is your next scan in 6 weeks?

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

I go back on November 8th for labs and another infusion. The next time (the end of November), they will do scans again, before the treatment. So yes, scans are every 6 weeks for the first few months. I feel okay today, only a little wiped out, bu my immune system is in high gear! Watch out cancer!!!

garym's picture
garym
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ATTA GIRL!!!

alice124's picture
alice124
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Joined: Mar 2012

Paula - I'm confused. Is there a difference between PD-1 and PDL-1?

Your receiving the 20mg was quite an eye-opener. As I think I reported earlier, Hopkins reduced the maximum dosage of MDX-1106/BMS936558 to 5 mg for John's and Tacyart's trials (John with Votrient/Tacyarts with Sutent). So, if I'm getting this, Hopkins decision to lower the maximum dose to 5mg for those in the PD-1 trials combined with Votrient or Sutent had to be more about combining the MDX/BMS with the Votrient or Sutent, obviously not concerns about MDX/BMS alone. Does that sound right to you?

Texas_wedge's picture
Texas_wedge
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Alice, it's actually quite a bit more complicated than that. (Funnily enough I was about to jot a few points about this and related issues, which I'll do later, after addressing my own decision treatment issues.)

PDL-1 is different. They are, in a sense, complementary or, perhaps, better, corollaries. The L stands for ligand which is a molecule which attaches to a target molecule. (Modern computer-asisted drug design involves speculative computer modelling of properties of materials, making educated guesses as to the consequences of such fits. It's highly relevant in current cancer drug research and design.)

As I understand it (subject, as ever, to correction by those more knowledgeable) the various new immunomodulatory agents are using one of two methods of attack - either attaching to the receptors on cancer cells or to those on our immune system's cells that the cancer is managing to hide from. Hence there are two different categories of drugs at work here and Fox's and Paula's are from opposite camps.

Also, there is rapid and increasingly competitive development going on between the various companies comprising Big Pharma. The drug that Fox and John are on (as to which, more anon) is already in the second generation of these and the one Paula is now on is part of the third generation and from a different company from BMS (and its predecessor in the development of MDX-1106, Medarex), Genentech.

Consequently (among several other reasons I'll leave aside just now) it's not possible to draw the posological parallels you've made and, beyond that, there are two stages in the trial phase that Paula's in, with different dosage protocols. So, you see, you shouldn't be concerned about the difference in apparent dosage decisions as between John's and Paula's regimens. It would be like comparing apples with orang utangs!

pjune127's picture
pjune127
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TW, I sure am glad YOU answered that. The best I can remember is picture the research nurse drew for me. She told me the drug latches on to my t cells and is able to "unlock" the invisible barrier the cancer cell has around it protecting it from my immune system. I actually didn't even realize these were not the same drugs. You are a smart man!

As an aside, I feel pretty well today. Just thanking God for another beautiful day here!

Paula xo

alice124's picture
alice124
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Thank you TW for providing the fruit of your uncompromising research. Agree with Paula, you are a very smart man. And we're all grateful to have you here.

Texas_wedge's picture
Texas_wedge
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I've just watched the excellent YouTube video by Suzanne Topalian from JHH which goes helpfully into this topic - wish I'd seen it earlier, but better late than never! It's entitled

"Anti-PD-1 (BMS-936558, MDX-1106) in advanced solid tumors"

and can be found at:

http://www.youtube.com/watch?v=Ij_hq_52K7M

There's a related video with the same provenance

http://www.youtube.com/watch?v=kCY0dHB_eyY&NR=1&feature=endscreen

also well worth watching, entitled

"Harnessing the Immune System to Fight Cancer"

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

These videos were extremely informative. Thanks for alerting me and others. I do hope it's working for me....hard to tell right now. New scans the end of November.

alice124's picture
alice124
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Just wondering how you are feeling Paula? You've been quiet recently. Hope no news is good news but looking for a *tweener (*in between treatment) report.

pjune127's picture
pjune127
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Joined: Dec 2011

I have been a little puny over the last 10 days. I have been plagued by low grade fever that comes and goes (with tylenol) and a somewhat overwhelming depression that I was finally convinced today is a veritable side effect of the treatment. It is not like me to be gloom and doom, uninterested, and antisocial; however over the last week or so I have hardly recognized myself. So...I called SCRI today, talked to a research nurse and was told the fever was all right, as long as I didn't have rigors, a productive cough, or muscle pain so bad I could not get out of bed. None of that applies to me. That was affirming. The depression I am told is a side effect. I hate it and I am determined to beat it. Today I forced myself to go out to lunch with a friend and visit another friend this evening. It's amazing how being busy is a true antidote, but it is a real challenge to get myself up and out. I'm afraid I have worn my husband out. He has done everything but stand on his head to cheer me up. Thankfully, on Wednesday we are going up into the mountains. We have rented a cabin with my brother and sister in law and are spending 5 nights there. A change of scenery will be good for me and I do love my brother and sister in law sooo much. They will also take me off Ed's hands for a few days. Good for everyone all around! Honestly, I don't feel too bad physically. It doesn't compare to being on Sutent and dealing with blistered hands and feet!! I do think the emotional aspect has bummed me out. I have always been the one with energy and drive and desire and positive attitude. Looks like "Bad Paula" has taken residence in my body for a bit. Maybe she will leave after Halloween. LOL I go to Nashville on the 7th with treatment on the 8th. It will be good to have #2 under my belt and have 3 more weeks until scans! Thanks Alice, for noticing I have been "away". You have no idea what a boost it was just to know that you noticed!

Hugs,

Paula xo

Texas_wedge's picture
Texas_wedge
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Just you stay right on target Paula. Trust Alice to be looking out for you. Think of Fox.

Giving Ed a break and yourself a change of scenery sounds like an inspired move and I hope you have a great time. Being in the mountains is a lot better than being by the seaside on the east coast at present and I hope to hear that Alice and John, Nano, iceman's family and others are escaping the worst of it all.

Get professional help if the depression persists, though I'm guessing it won't. Stay active; remember how much nastier it was with bad HFS; keep your eyes on the prize now you're on a promising new treatment and blazing the pathways along with Fox.

garym's picture
garym
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Hi Paula,

Three years ago today I woke up in the ICU all busted up, with a probable dx of RCC, and realizing it was not a dream. "Bad Gary"was running rampant until my mom (81 at the time) grabbed me by both shoulders, looked me dead in the eye (a chilling experience even without morphine) and told me "Gary, you will be fine!", Bad Gary whimpered off to a dark corner somewhere and never returned. Now, close your eyes, feel my hands squeezing your shoulders, visualize "Bad Paula looking out, seeing my ugly face and being scared back into the darkness from which she came, and hear my voice "PAULA, YOU WILL BE FINE!". Heed my advice or I'll be forced to send my mom "Bad Louise" down to see you. This is always a two sided fight, cancer doesn't just attack you physically, it attacks you mentally as well. You will win both battles, you are stronger than you think you are, you are a warrior and a dragon slayer, hang in there.

Godspeed,

Gary

alice124's picture
alice124
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Paula-I have one question for Ed. WHY AREN'T YOU STANDING ON YOUR HEAD? :)

Paula, I know this has got to be tough but if anyone can do it, it's you. And one of your strongest weapons is your positive attitude. Time to put it in overdrive. Utilize your gift for visualization to envision the cancer being washed away! Think of white water rafting and the rapids racing into your canoe--soaking your entire body--and racing out taking the cancer cells with it. Psych your soul up!!! We're all holding and squeezing your hand with support. I just experienced a chill when that cold water splashed over me. With you!!!

angec's picture
angec
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Paula, sorry to hear that after a few weeks the side affects are still there. Maybe they will consider lowering the dose a bit? I am praying this is only temporary and that it will all work out. Wishing you the best. Please be safe on your trip. xoxo love and big hugs!!
Angela

DMike's picture
DMike
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Great news Paula! I'm very happy for you. I'll continue to follow your progress and send positive energy your way.
--David

foxhd's picture
foxhd
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I constantly am thinking and worrying about you. It is not depression. It is discouragement. Sort of anti climatic. Waiting, and waiting for the infusion. The stress is huge. But getting the infusion doesn't solve the emotional component. Round one is over but it is a world championship fight and there are many more rounds to battle. Fatigue takes it's toll. It drains your energy. Makes somewhat minor issues become more noticeable. You'll be going for your second infusion soon. Not many people can say that. I'm happy for you and proud of you. So go and have some fun playing in the woods. Watch out for hillbillies and moonshiners. Fox loves you.

I am alive
Posts: 229
Joined: Jul 2012

Bad Paula is just Sad Paul. Sad happens. I've been on the clinal trial track for only 12 weeks now but, for me anyway, these side effects come and go. Sad has been one of them. Two or three times I've burst into tears without warning, for no apparent reason and felt the need to vent. Not the "why me?" wail, because we all know that terrible things happen to people all the time & none of us is exempt, but the "I can't believe this is really happening" rant. Which is perfectly normal. My theory is that some of these side effects taper off as your body acclimates itself to the drug. So I'm betting that feeling blue will dissipate. You are certainly doing all the right things, forcing yourself to get out of the house with friends & going on a 5-day holiday in the mountains ain't shabby (sounds fab, can I come?!). Smile (it's a trick - once you do that you feel better, something about your body tricking your emotions). We love you Paula! All will be well.

pjune127's picture
pjune127
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I've had a very tough go these last three weeks. I still am working at managing fever, low blood pressure and rapid heart rate. The constancy of these side effects has left me wasted, physically and emotionally. Walking across the room left me winded and my heart pounding. After many family discussions with input from doctors and friends, I am going to tackle this by dealing with the side effects as best I can. I am going to make a concerted effort to hydrate, eat, and rest. I have acknowledged that depression is a side effect of this drug (as it is in the same class as IL2) and I am going to take some medicine to try to straighten that out. I have changed my blood pressure meds ( really don't need them now, but I need to slow down my heart a little). It is back to Nashville for me tomorrow. They do not seem terribly concerned with my s/e.

I just wanted to update. The mountains were beautiful and the time spent with family and friends was priceless.

Love you guys...

Texas_wedge's picture
Texas_wedge
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I was thinking about you but fifteen minutes ago! Sorry you're having it so hard, Paula, but remember how hard Fox fought to get where he is and you're made of the same stuff.

It's reasuring that your docs aren't too worried about your s-e's but then they're not suffering them!

Your plan sounds sensible to me and good luck tomorrow - I'll be thinking about you some more, today and tomorrow.

foxhd's picture
foxhd
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We've been worried and concerned about you. (but no one more than me). You can do this. You'll get the medications and side effects under control. I have great faith in you. Stay vigilant. You will do this. Love you, Fox.

Limelife50's picture
Limelife50
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Just to let you know i am also in your corner and sorry to hear you having a little bit of a rough going,i know from my own experiance depression alone can be tough enough so i know when you add the physical SES to the mix it has to be that much harder to push forward.With that said i hope you are able to make it to the FINISH LINE!! on this treatment and get those good results all of us are pulling for you to get.

Max Power's picture
Max Power
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Well Paula, it looks like you have things well in hand, are making all the right decisions. You seem the kind of person who will come out on the other side of depression unscathed! You are always looking forward. Keep busy as you say, and enjoy the family and scenery. We're here rooting for you.
Max

jam66
Posts: 55
Joined: Jun 2011

Paula, so sorry to hear about the poopy side effects. It does sound like you're doing all the right things though. Depression can be so debilitating. Try to get a handle on that.....maybe there's a medication for that? (II started to take my little happy pill after the failed IL-2 treatment. ).
We're all rooting for you and look forward to good news! Take care, Jennifer

alice124's picture
alice124
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Paula,

We sure miss you around here so do what you need to do to get stronger and to broaden that smile. Any drug in the same category as IL2 is tough, but you're tougher. Hopefully the side effects you're experiencing are just a reflection of the war your body has declared against the CANCER and you're doing what you've said you were going to do all along--kicking its butt. The second infusion will carry the reinforcements to deliver the knock out punch.

Show that Paula confidence and "kick it attitude" we all love. You know we're all with you; soulnergy on its way. Feel it!!!

Raine22's picture
Raine22
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Joined: Jun 2012

I read often but don't post very often. Paula, I absolutely love Tennessee and will be imagining you driving through that gorgeous countryside tomorrow!
You are still here - cranky, sad, pissed off - however God wants you to be today, in order that tomorrow will be another blessed day.
You and all the others here are n my prayers daily!
Lorraine

Texas_wedge's picture
Texas_wedge
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Lorraine, what a lovely message - just what Paula needs to hear and certain to cheer her up.

I have to say how uplifting it is to see those smiles - Paula, Alice, Rae, Lorraine - just keep them up for the benefit of the rest of us, please!

pjune127's picture
pjune127
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Joined: Dec 2011

First of all, let me extend my sincere love and thanks to all who sent me notes of encouragement. While I was so down, I could not answer anyone...totally absorbed in my own miserable world. But now I want to say that I am so grateful for all of your thoughts and prayers. I apologize if I have appeared untouched by your kindness. NOthing could be further from the truth,

Let me start by describing my 5 days in the mountains. It was absolutely beautiful, but I was in such a bad place mentally and physically it was hard to enjoy. My family and friends were very attentive, but I'm afraid I wore them out totally. I was feverish, dizzy, and unable to move from one spot to another without my heart pounding right out of my chest. I had gone to my local oncologist the morning we left to have a fever panel run. As expected, everything came back negative. My family was quite concerned and "took charge" so to speak. First off was to follow the recommendation of a family friend/oncologist and get me on an antidepressant. Hello Cymbalta! And welcome back sanity!!! An incredibly quick response was just what I needed. Next, I was put on a tylenol regime....one tylenol every 4 hours to prevent the roller coaster of fever. This seemed to help as well. A change in blood pressure meds, to control my heartbeat that was averaging around 110. The low blood pressure persists, but it is much better controlled with the Cymbalta which raises blood pressure a bit. Better living through chemicals I always say!

So on Wednesday we drove to Nashville. I had to pinky swear I would not back out of the trial. After much discussion at SCRI about management of side effects I agreed to proceed and right now I am feeling all right. The acid test will come in the next couple of weeks. It was decided, through an "iron panel", that I am seriously anemic (8) and will be getting 2 feraheme injections/infusions over the next two weeks at my local oncologist's. I hope this will relieve some of my fatigue. Anyone have any experience with this treatment?

I have rediscovered my "bounce" and I am back for the fight after a short trip into despair. Depression totally sucks, and having been there, I am here to tell you I never want to go back. Not a nice place!

I will try to keep you updated. I worry about all of us! TW, how is the votrient feeling? Love to you all.

Paula XO

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

I have been worried about you. Now I feel so much better. (as if it is about me). I guess that in many ways we all become close and vested as one. I feel a huge sense of relief and will have a wonderful day. Once stabilized and the veteran of a few more infusions, it will be much easier. I'm so glad you have grabbed this bull by the horns. ( no, this part is not about me). Did ya smile? See, things are looking up. Love you Paula. Fox.

Texas_wedge's picture
Texas_wedge
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Glad you've got that bounce back Paula. Didn't need to worry that Fox seemed a bit subdued - he's obviously on excellent form, especially now he knows you're back in shape.

Funny you should ask, I'd just taken my second day's dose of Votrient. No knowing when/if the s-e's kick in but, so far, so good. Had a good hard rowing session this afternoon and will be golfing in the morning, so can't be too bad. Have to follow the examples the likes of you and Fox are setting!

angec's picture
angec
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Sweet Paula. So glad to hear that you "took the bull by the horns"..wait a minute, did someone say that already? LOL That is a very powerful statement! I think now that you have addressed the side affects things will become so much easier going forward. But am very happy that you found your bounce! Don't worry about putting the family/friends through the mill, i am sure that it is very scary what you are going through, even though the light is at the end of tunnel, you have to deal with the here and now. You are doing great! My hat is off to you! I am sure if there were any real danger they would have cut your dose, but things seems to be manageable. Any word on the anemia? That does explain the fatigue. This too will be handled and it will help a great deal. The fevers i believe are a good sign, that means the body is fighting for you.

Praying for you Paula. Keep up the fight and keep up that spirit!! When you get your scans and see that things are improving it will be all worth while. I hope you did enjoy the mountains and that beautiful drive. Update us when you can and let us know that you are feeling even better. Love to you, a true fighter and hero! xxoo

alice124's picture
alice124
Posts: 882
Joined: Mar 2012

Welcome back Paula!

Writing "welcome back" just sparked the theme song from the long ago sitcom "Welcome Back Kotter." I loved that show and now that tune won't go out of my head! So all you long ago Kotter and Barbarino (John Travolta) fans are going to have to have to enjoy (or suffer) with me. I hope you remember it too Paula, because the theme words work here for you.
_________________________________
Welcome back, your dreams were your ticket out.
Welcome back to that same old place that you laughed about.
Well the names have all changed since you hung around,
But those dreams have remained and they're turned around.
Who'd have thought they'd lead ya (Who'd have thought they'd lead ya)
Back here where we need ya (Here where we need ya)!!!
__________________________________

Anyway, I am thrilled that you're back on track. As the lyrics say, we need ya. I'll communicate more when I'm able to UNSTICK these words in my head.

garym's picture
garym
Posts: 1651
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Now that tune is stuck in my head too, spreads like some kinda virus, like Arnold Horshack, you're one of a kind!!

Dear Paula,

In any fight your opponent is going to fight hardest in the beginning before eventually being pounded into submission, no difference here. Cancer does not have what you have, a great medical team and the love and support of your physical and virtual families, its ass has already been kicked, it just doesn't know it yet! A nurse once told me something that I found very helpful, she said "Always remember, we must experience the darkness to appreciate the light." You will be stronger for this experience for you are a dragon slayer, YOU ARE A SURVIVOR!!

Hang in there,

Gary

alice124's picture
alice124
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Gary,

I owed you after ruining Leave it to Beaver for me! :)!

pjune127's picture
pjune127
Posts: 127
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Gonna put some pink in my cheeks. After seeing my oncologist today he said feraheme is not my answer. He made some phone calls and 2 units of blood will be waiting for me at 1:30 this afternoon. This will NOT exclude me from the study,,,thank goodness. Here's to more energy and a happier Thanksgiving holiday.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'll drink to that Paula! Hmm, I wonder what would be suitable. Ah, yes! (Gary, you've guessed.)

Relieved you can stay in the trial, Paula, and that you'll have a pleasant Thanksgiving. Hope you're soon back up to being able to post your updates more often because we're all thinking about you.

I am alive
Posts: 229
Joined: Jul 2012

Paula,
I too have been thinking about you a lot, wondering how you're doing. It's not like you to be so silent! Your warmth and generous spirit has been missed! It is great news that you'll be able to stay in the trial, rocky as it has been for you thus far. I'm betting things settle down and you find your groove. Have a wonderful Thanksgiving, and know that you are loved here, too.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Paula,

No wonder you've been struggling a bit,this ought to make quite a difference in how you feel, but I hope neither unit comes from Tex, you'll be up all night. We're all pulling for you so hang in there.

Here's hoping for a wonderful Thanksgiving,

Gary

alice124's picture
alice124
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Joined: Mar 2012

Paula - Can't happen fast enough for your many friends here. We've missed you and can't wait for you to return to your upbeat, sweet self. And so relieved it won't interfere with trial.

Best news I've heard all day!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Got home late last night from Nashville after a long full day of all the procedures I love to participate in (big sarcasm here!). It began with a 5:45 wake up call so we could be at the scan site at 6:40. The scan was at 7:40, so I had an hour to drink two large cups of contrast. I have to admit it has improved...actually tasted like not quite right Crystal Light (that was so rhymy!) Out of there by 8 and and to the lab where I swear they drew 1/4 of the blood I had transfused 10 days ago! Then to see Dr. Bauer, clinical trial doctor, who after looking at my scans entered the room saying "Good news!" I'll take it, especially when I was told not to be disappointed if everything had grown. Actually they are watching three things...one on my adrenal gland and two in my lungs. The adrenal gland remained stable, one in my lung shrank considerably, and the other grew minimally. This is supposed to be excellent news for a 6 week scan, considering this is an inflammatory process at the beginning of treatment. The 12 week scan is the important one. That will come in January. A few hours later I received my infusion, got a dose of liquid iron, and a B12 shot. Should put a little pep in my step for a while. In the car by around 3 and home by 9 (EST). Not too bad. I have felt pretty well the last few days and this treatment has not yet (and hopefully won't) wear me out. If I remain as I feel today, I will have to announce, "NO BIG DEAL!", but I don't want to be premature. Stay tuned. Love you all.

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Wonderful news! My experience has been that lung and other soft tissue tumors respond well. And in only 6 weeks! Now that all your meds are being properly managed, you will get used to them. Even if there is some getting adjusted to them. If one already likes themselves then the new "you" is still good. It seems that the wait for the "next" scan is always weighing in as an "important" one. So happy for you.Remember, this Karma thing only works when we share it. FLY. Fox.

alice124's picture
alice124
Posts: 882
Joined: Mar 2012

Can you feel my smile in Atlanta? Wonderful news. Liquid iron and B-12 shot sounds like a perfect prescription for a big shopping spree; but the way it sounds you'll have plenty more opportunity. Sounds like a big first step. Proud of you.

Love,
Alice

P.S. Have you been reading those rhyming books to the grandkids again--pep in my step and not quite right Crystal Light?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Lucky you pointed out that that was sarcasm - I rose at 5:40 this morning by choice (admittedly I had to pick my Wife up from the railway station at 6:30). However, I might have figured out you were being ironic when it got to the bit about spending an hour drinking contrast!

That sounds like excellent scan results and I dare say Fox will be along in a moment to confirm how good (and also to endorse the NBD). It's nice to hear you're feeling so much better and we'll all be staying tuned, you can be sure of that. You and me both: having important scans in January and we're probably not alone here in that. Let's hope we all keep on doing well.

alice124's picture
alice124
Posts: 882
Joined: Mar 2012

Oh no Tex - you just triggered that "Welcome Back" Kotter song AGAIN. Here we go! With me Gary? :)

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