Hubby's PET Scan

Hello Angela,

Complete remission is great news.  The pneumonia is no good, but hopefully it will pass quickly and let you guys enjoy your trip.  I don't know what type of maintainence regimen your husband will be going on; if it includes chemo or is just herceptin, but I can tell you about mine.  The weekly herceptin is considered a maintainence regimen.  At this point (coming in on 5 years of just the herceptin) there's no evidence to show that continuing herceptin is effective.  There's  no evidence to show that stopping it is the right thing to do either.  So, my oncologist and I are just going along because something has worked so very well for me and we're not going to fix things that aren't broken.

I'll suggest to you that even if you don't have much new information to report in the future, you should still stop by and check in here.  There may (actually WILL) be new folks who could benefit from hearing your story.  Stage IV survivors aren't super common and new folks always find hope for themselves when they hear first person stories that it can be beaten.  Offering hope to folks who find themselves in a situation that they may see as hopeless is a big deal.  Also, you guys have now been through the wringer and are hopefully coming out the other side in one piece.  Folks just starting off on this journey are generally fearful of the unknown.  They can deal with just about anything, as long as they know what it is.  You can now let people know what your road was like and what they might run into.  Helping to reduce folks' fears is also a big deal.  I hope you take advantage of your chance to help others who find themselves in a bad spot.

CONGRATULATIONS ON COMPLETE REMISSION,

Ed

Jade48 said:

I had a question about Herceptin

My dad has stage 4 esophageal cancer. Diagnosed September of 2015. Hes been through 2 rounds of chemo, no surgery or radiation, is just starting his 3rd round...Cyramza. And last friday, they gave him his 1st treatment of Herceptin. Im not sure if it was the way the drug was administered, or what, but my dad had a bad reaction. He started getting real cold , my mom said he was shivering uncontrolablly, and his hands and feet went a little numb. No rash or anything. They gave him a shot of benydryl and sent him to the ER...his heart rate was 100 to 115...just sitting. It took about 24 hours for that to come down to normal. They ended up keeping him in the hospital for 4 days because during an xray of his chest ( looking for bloodclots) they saw he had some pneumonia in his right lung at the bottom...started him on IV antibiotics and ...his sodium levels were low. 125. They started him on an IV saline drip to get his sodium levels back up. He came home night before last. The night following his release from the hspital, he was at home talking to me on the phone, all was fine, then all of a sudden he said his nose started bleeding. Bad....it was coming out his nose and going down the back of his throat. So, back to the ER he went. It had slowed down once at the hospital, Dr said it looked like an irritated vessel...he cauterized it and sent him home. Said it could be from dry air...or the breathing treatments he was getting..not sure. So....my question now is....he wants to stick with the herceptin because of all the great things hes heard about it...but...can he? My mom said the girls at the clinic it was done at ( not the normal place my dad usually goes) didnt really know how to do it, it was their 1st time dealing with Herceptin. Im wondering if they had it set at too high a drip rate or what..? any suggestions??

Angela, congratulations to you and your hubby...that is such wonderful news.!!! Esophageal is so nasty and its always something to be monitired for even while in remission..do not give that nasty stuff one minutes rest. Anything you can share with me would be great. Were wondering where to go from here. He was supposed to have his cyramza after the herceptin but because of his reaction they sent him to the ER without getting his Cyramza treatment. Hes not suppose to see his oncologist until the 20th...but he plans on calling to see if he can get in for his cyramza treatment asap.

Also....in the past after his chemo drips, he would be told to go home and drink lots of water...Hes been doing that, but the ER docs were concerned he was drinking too much because of how depleted his sodium levels were. Any tips on making sure he can drink water and flush junk out of his system but not deplete his sodium?

Thank you!!!

Michelle

Hello Michelle,

I haven'texperienced exactly what your father has, but  I have had A LOT OF HERCEPTIN (my oncologist says more than any EC patient in the US) and I'll let you know what I have been through.  First of all, heart failure is a known side effect of herceptin, so I've been getting echocardiograms every 3 months for the over 5 years I've been getting herceptin.  It needs to be monitored closely for folks like me with no known cardiac problems, and herceptin may be ruled out completely for folks with heart trouble.

I have had cold sensitivity and neuropathy, but that was from folfox, not herceptin.  I was getting both, and it went away when the folfox stopped, but the herceptin continued.  I have had nosebleeds for about 5 years now (just had another this morning) and I believe it's associated with the herceptin.  There's nothing that I'm aware of that says herceptin can cause them, but my own experience leads me to believe that it happens.  

Regarding the center where your father is receiving care, I always recommend to folks to go to a top of the line cancer center that has folks who deal with EC for a living. EC is not a sprained ankle that can be adequately treated at the ER down the street.  I can't believe that it was the first time the nurses have administered herceptin.  It has been used a lot for breast cancer for years and years.  If they're really unfamiliar with it, I'd suggest going someplace with more experience.  I get benadryl and tylenol as pre-meds every week before receiving the herceptin.  As far as I know, that's SOP.  I don't know why they waited until after your father had a reaction to give him benadryl.  

I've also been told to drink plenty of fluids after chemo, but never ran into any problems flushing things like sodium out of my system.

Hope everything works out well for your father,

Ed

Jade48 said:

Hi Ed

Thank u for the speedy reply. My dad had some sort of test before having the Herceptin, where a nuclear medicine was injected into him and they watch how it travels to see if his heart was strong enough to handle it. Being that he got the Herceptin, Im assuming that means he passed his test. I am not present for ALL of his appointments and tests, but I try to go when I can. In any case...other than him having high blood pressure that hes on meds for, he doesnt have any other issues with his heart. But...I didnt like how his heart rate was so high. He didnt seem uncomfortable about that. We were all just chillin in the ER in a private room chatting and he had one of those things on his finger monitoring his heart rate and even though he was at rest his heart rate was pretty hgh. It did start to come down into the 90's while we were in there but as far as I know didnt come down to normal ranges until the next day. He had the Herceptin at about 2pm friday, by 3,330pm he was in the ER...and there we sat for hours. He didnt get his own room and checked into the hospital until about 1230am.

I'll have to see about the Folfox. Im not sure he got that along with the Herceptin or not. My mom didnt mention it...but shes been a little scatterbrained lately with all thats going on so I will see. Your nose bleeds, were they gushers?? Or simple nose bleeds. My dad was gushing, he said it was squirting out like a stream...and he was swallowing gulps of blood. and there were nickle sized clots he was passing thru his nose too. Gross I know. Sorry.

The place he had this done was a medical clinic across from a major hospital that his oncologist works out of. His oncologist has 2 offices, one right  by my dads house and this other one that he goes back and fourth between. This was my dads first time at this clinic, he was scheduled for his drip there because thats where his oncologist was that day. Normally they try to get ALL their appointments closer to home. Hes had no issues with the place closer to the house, but as I said, this was his 1st time at this other place. Hes already said hes not going back there.

Thanks again for all the info. Every little bit helps.

Have you noticed that your heart rate increases when you have Herceptin? You might be more used to it now, but maybe when you first started it?

Angela, 

5 FU, leucovorin and herceptin is 3/4'sof the primary treatment I received.  Folfox is 5 FU, leucovorin and oxalyplatin.  Oxalyplatin is by far the harshest of the drugs in that cocktail and was probably cut out b/c of brutal side effects it was causing.  Leucovorin is not chemo, it is some sort of activating agent that makes the chemo drugs more effective.  5 FU is chemo, and likely won't be prescribed as a maintainence treatment.  5 FU is also for when your cousin's one "F...you cancer" just isn't enough to express your hatred for this SOB.

Jade48 said:

One other question. 

One other question. 

In all your years and experience with Herceptin, is there any way that you know of, that they can administer it so as to maybe lessen the severity of the onset of side effects? 

I think I read somewhere where it was believed if they slowed down the soeed of the drip, that might help? 

Some of the more worrisome sode effects, listed under the "call your doctor at once" section...that my dad has, even a week after treatment  are.. .

Rapid weight gain, ( drs at hospital say hes gained alot of water weight, dad says his legs feel like stone...heavy...they gave him lasiks ? But his reg doc took it away. Said it would interfere with something else he was on and told my dad that he was probably swelled up from the fluids he recieved in the hospital and it should subside in a few days. ) confusion, sores on mouth,  swelled feet, ankles, mental/mood changes, pale skin, unusual bleeding,  unusual tiredness, joint muscle pain. These are just the ones I've seen and heard him complain about. I was over there lsst night and when I asked him how he felt, he said, like ****. His whole body hurts, he has stomach pain, and he did throw up last night after eating a small amount of food. My mom said that was the 1st time he'd thrown up but, he hadnt eaten much all day. He started falling asleep in the chair. But not sure what from...my mom daid the pill he takes for upset stomach makes him sleepy. He has an appointment with his oncologist on the 15th and we are supposed to discuss weather its safe to keep using it. My dad wants to, but were not sure given his reaction to.it, unless there is a milder way to administer it, like, baby steps? 

Hello Michelle,

The only ways I know of that herceptin can be administered differently is by the amount of time between doses.  There are two ways of administering it that I'm aware of.  The way I do it is weekly; it can also be given every three weeks.  I think the only real difference there is that they give you three times as much if you get it every three weeks.  I don't know what impact either regimen has on side effects.  It could be something to ask about at his appointment.

Best Wishes,

Ed

My dad has another treatement today of herceptin. We hope it goes better than his 1st where he had some smoewhat severe side effetcs from it...but they neglected to give him the benydryl beforehand, this time I will be there, I plan to make sure every safety measure is taken. My question is....his oncologist doesnt want to do chemo along with the herceptin. Since my dads last dose of herceptin 3 weeks ago, hes been weak, some trouble breathing, ( but thats gotten a little better) hes been very tired, his general feeling of well being is worse off than its been thus far since hes been diagnosed. That being said thats why his oncologist doesnt want to do chemo AND herceptin. He gave my dad a choice and he chose to try the herceptin again. Doc said if it dont go well he wont use it anymore and if my dad wants to continue treatment he will go back to just the cyramza he planned to use WITH the herceptin. Will only using herceptin while he still has lesions present on his liver and stomach and lungs, merely confine the lesions and keep them from spreading? Or will it eradicate them?

Deathorglory said:

Herceptin

Hello Michelle,

Did you ask them at you Dad's appointment about the difference in side effects between gettting herceptin weekly vs. getting 3x as much at once, but only every 3 weeks?  What did they say about that possibly reducing his side effects?  My understanding (not an oncologist, by any means!!!!) of how herceptin works is that it is very good at increasing the effectiveness of chemo when combined and that it is also very good at keeping recurrences at bay.  I'm not aware that it actually kills cancer by itself.  I'm not aware of herceptin being used as a single treatment by itself, only in conjuntion with standard chemo.  The exception is after that combined treatment, herceptin is used solo as a maintainence drug to stave off recurrence.  Unfortunately, it seems like a real possibility from what you decsribe that your dad might be feeling worse from the progression of the disease moreso than the chemo.

Thoughts are with you,

Ed

I didnt ask that question...no. However, this last treatment went much much smoother. He did well during treatment , no side effects, and was even doing well once home later in the evening.  Hes doing the 3 week treatment plan. They were very careful to make sure this time he got the benydryl 1st...and she let it get in his system for 30 min before starting treatment. He did so well that my mom said maybe they can actually do the Cyramza now? I told her lets wait and see how he does.  I called him today and he said that he didnt have a good night. I was on such a high yesterday because of how well he did, this was not fun to hear. He said he was too cold at first...( hes been complaining of being cold right along, for months..not anything new) so he turned up his thermostat, then he said it got too hot and he sweated thru his pjs and had to change. He was uncomforatble and didnt get much sleep at all. Today he said he feels weak...tired, just kind of yucky. But, his heart rate, blood pressure , and oxygen levels were all good. (he has gadjets at home to check these things) I had them check his sodium levels and potassium too, before treatement yesterday and all of that was good. So...I dont know. His blood work always comes back within normal ranges. Certain things are off due to medications hes on but nothing out of the ordinary. Im starting to think he should just be on the Cyramza and only do the herceptin later on if they can get rid of some of his lesions. Instead of doing both at once. ???