andy has been stalled again. the RO said he needed a break to "heal" a little. isnt that what recovery is for??? he only has 5 IMRT left.
i know he is in bad shape but it seems like the dr.s are keeping him in the dark tunnel. everytime we see the light, its a train that runs into him and knocks him back.
he is losing his will and im losing my mind.
i have decided to take a LOA from work. i cannot balance work and push him that last mile.
the MO is sending him home with a "baby" this weekend. he is not happy about that at all.
it sucks that the end is so close...yet just stays out of reach.
i should have known better to change his ending date...i jinxed it.
. so i will leave it alone until his treatment actually ends, then i will go back and correct it.
thanks for letting me biotch and moan and scream and yell and....uuugggggghhhhhh!
Oh, Theresa, I am so sorry about that. I hope he gets through this quickly. I am telling you this recovery time is for the birds. Just keep us posted.
Teresa,
We are here for you to biotch and moan to dear, so let it go. It's a huge blow mentally to be so close to the end and having it pushed farther away, so it's OK to bitch. Anyone who's been there knows...especially near the end.
Good for you taking a LOA, my wife thankfully could be there for me the entire time during treatment and surgery and it was a huge boost for me.
Keep your chin up, you are almost there!
Eric
Teresa,
I also wanted to say that I think it is great that you are taking tie off from work to be there for Andy. I really look back on all the treatments and stuff and wish I would have had more help. I did get a lot of help from church friends, but not much from my ssignificant other and I get angry when I think about it. So anyway Kudo's to you for taking off work to be there for your husband.
Sorry to hear and sometimes a day or two break is absolutely necessary. Being this close though, the doctors will push to get him across the goal line. Very tough stuff at the end. Good luck and a spouse, relative or close friend is invaluable to have close by.
oh bill...u would think they would want to push to get him thru....so why did the RO just call and tell me they are stopping his treatment for 4 weeks and then will resume??? wtf????
she said that it appeared he is physically not strong enough to resume, that he needs to recover from treatment so that they can do more rounds of IMRT and chemo.
has anyone else ever stopped treatment for that long only to resume later???
first of all, i was not there when they told him he was cancer free. i am questioning him on that. our daughter took him to treatment that day. i asked her and she said she was not in the room either, but he told her that his scan showed no tumors. is that cancer free??? and if he is cancer free, why are they planning more rounds??
i am extremely distraught right now. i will have to call the RO myself and ask these questions.
another train....smack in our faces!
any feedback would be appreciated, i am at a loss
Teresa,
I would definitely question a 4 WEEK delay. Never heard of that length of time, 4 days maybe but not 4 weeks. How bad off is he? I remember in my last week of Tx Moffitt kept me overnight because I was so dehydrated and so nauseated and so constipated and so everything and they still wheeled my ass down to the rad room the next am to get my 8:30 Tx.
Teresa, my advise would be to ring the RO and get this information first hand. It will make you feel better because you will know exactly what's going on. 4 weeks does sound a long time but if you speak with the RO personally they might be able to put your mind at ease. Question everything until you are mentally comfortable with their answers. Even when Steve was in hospital for that 11 days they still got him to tx every day without fail. I think a loa for you is good. I took 6 months off work so I could be there every step of the way for Steve's treatment and mentally for me I think it made a huge difference. For Steve as well it helped knowing I was there with him.
Hang in there girl and let us know what you find out and how Andy is. Sounds like he's had a terrible time and I feel for you both xo
Hi Teresa. I'm so sorry you are both going through this. I don't understand stopping for 4 weeks when he is so close to the end. It took every once of stamina, strength and energy that JOhn had to get him to his treatments the last 2 weeks. His appointment was scheduled for 11am and he barely made it there and it is only 15 minutes from our house. He literally had to have someone help him out of the house, in the car, drive him there and then get him back home. If I was you, I would call the RO and tell him we do not want to stop being this close to the end. Sending you a huge HUG. I can't even imagine how frustrated and angry you are at this point. John did get scoped during his treatments and the RO told us that there was no evidence of the tumor. I didn't take that as being "cancer free". I just read that as the treatment was working.
andy has had ALOT of complications throughout IMRT. he has been doing IMRT for 10 weeks but has only managed to get 35 done.
I talked to the RO, she said the medical team decided to give him the break to let him heal a little and mainly to stabilize him. he will be on 24 hour a day fluids thru his port and jevity pump thru his PEG at all times. his continued low blood pressure and blood count are of "grave" concerns. he has lost his hearing completely in one ear and near deaf in the other(his chemo is carboplatin). he also lost another 7 lbs last week--thats almost 60 lbs total.
he is not cancer free
it turns out. his tumors have shrunk so much, they are barely detectable. this is what the RO told him...he took it a different way.
how do i go back and tell EVERYONE this...and even him
. it will take away his spirit.
frustrated doesnt even barely cover how i feel. horrified...maybe. broken...closer. but never beaten. wont give up now.
by the way david, i got a little chuckle of ur description of ur overnight stay at the hospital....sorry my laugh was at ur expense...but i needed a good laugh--so thanks!
Teresa my heart goes out to you and Andy facing this unexpected delay when all you want is to get finished and let the healing begin. I hope your talk with the RO helped to answer some of your questions and gave you a little peace of mind knowing the reasoning behind the treatment decisions. Are you able to find a few minutes a day just for yourself to refresh your mind and spirit. Caregiving is a heavy burden at the best of times and more so facing the challenges O.C. treatment brings. I wish you both strength and courage to make it across the finish line.
Teresa, I wish I could give you a big hug. What Andy's doctor's are saying makes sense I suppose but doesn't take away the stress and concern both you and Andy must have. You must both be feeling like you will never get to the end of this. But you will.
You are doing an amazing job girl. It's not easy being a caregiver. Damn hard in fact. But we do it because we wouldn't be anywhere else in the world. Stay strong and never, ever give up.
Wendy
i have gotten over the initial shock of it all and am doing better.
i am going to linger in february knowing he doesnt have to endure any more treatments. i will face
march 1st in
march.
my little yorkie has been clingy all day...wont let me put her down. its like she knows im sad and is sticking with me.
I would have to agree with both Eric and David on this one. In my 7 years here I have never heard of anyone getting a 4 week break in radiation. My oncologist at UCSF and wrote the book on IMRT didn't like me missing treatments for any reason, well except for a few time when the machine went down.
I lost over 61 lbs and literally crawled into treatment the last few weeks - they did cut one Cisplatin treatment because I had such a severe reaction. I also made 2 trips to the ER. RT/Chemo is no walk in the park.
How is he faring? How are the mouth sores? Neck burns? Pain management effective?
I believe that the main benefit of RT is the accumulative effect and also the fact that the effects keep on going, for a time, post Tx. Maybe that's his logic?!? Maybe his bloodwork numbers are so poor he may have an unneccesary risk from completing treatment at this time. I would grill the RO about his decision and what the risk/benefit could possibly be from the delay. It is very unusual. It's the longest break in Tx that I have heard of.
he has mucocitis-his entire mouth is a sore, thrush, severly burned face and neck, on fentynol 125 (manages his pain...puts it at a 3). having alot of trouble breathing. some of it is mucous, but it is also nasal blockage due to swelling.
his main tumor is in his nasopharynx. he cannot breathe out of his nose due to the swelling (he also has frequent nosebleeds), and breathing out of his mouth due to the mucous is challenging.
he has had to have his mask redone 2 times due to swelling.
his bloodwork numbers where also one of the reasons to delay treatment.
after the intitial shock wore off...the delay made since to us. what use is treatment if he cant breathe??
I think that most of us had severe mucositus in the end stages of treatment. Mouth sores were a bitch as well. In addition to skin burns. I had thrush so often I was on a 400mg/day "maintenance" dose of Diflucan for months. I honestly don't remember how breathing through my nose was and I have gotten nosebleeds all of my life. We all respond differently to treatment but that wouldn't prevent me from asking the RO about the risk/benefit of a 4 week delay in completing treatment. I had low white cells, low red cells, I used to wonder just what the hell was in there?!?! I can understand how esophogeal constriction may be a reason for a break... But this is a first on the forum.
Where is he being treated? At a NCCN CCC or NCI CC I hope.
Sorry to hear how much he is suffering. Isnt there a shot he can get to help with the white count? Ive heard of one but cant remember the name of it. I never heard of a 4 week break either. Poor guy
You are doing a great job speaking up for him. Sometimes being a caregiver is worse than being the patient. Both of you hang in there
he gets the amifostine shot everyweek. we are hanging in there.
Teresa,
You are dealing with an enormous amount of stress now. Please let yourself off the hook and don't worry about telling everyone anything. Clark and I have been through similar things--as soon as one of us said something positive about his recovery to our family and friends, almost the next day another unexpected issue would arise. People heal differently and at their own pace. You are doing a great job as Andy's caregiver. Hang in there.
Anita
Amofostine has nothing to do with blood cell counts. It's purpose is to preserve salivary function and most patients don't tolerate it very well. Most here have had to stop it's use long before the end of treatment. If he is getting IMRT then he probably doesn't need it anyway.
Procrit is the drug they sometimes administer to help with blood count issues.
See
http://www.mayoclinic.com/health/cancer-treatment/CA00066
Teresa,
Did you say he already has completed 35 treatments? Most of us only get 35 treatments so maybe that is why the RO is willing to give him a break. Why did they think he needed extra weeks?
Take care,
Eileen
Eileen,
I was thinking the same thing. I know I got 70 gy over 35 treatments. I asked about this specifically after hearing it on this site. Originally, someone had listed 40 treatments on my chart. After coming here members thought that was a bit long so I asked. My RO said it was a mistake on an early assessment and that after the planning stage they put in the 35. He also said it was 70 grey units (gy)
Kelly
The maximum I have seen is 72 Gy and at 1.8 Gy/day (maximum fractional daily dose) that would still only add 2 days. 70 to 72 Gy's would be 35 to 37 days respectively.
ur right gary (of course
) . the amifostine is the shot he got each day with the IMRT. he did have to stop taking that one a while back. he does get a shot 2 days after his chemo although i dont know the name of this one.
yes he has already done 35. his planned treatment is 40.
he has a dr appt tomorrow, i will find out more.
If he was getting Procrit it would be administered in his stomach, by injection, daily.
Evidently since the last time I explored prcrit there are additional warning and contraindications for use with H&N patients refer to this link if you are on Procrit.
http://www.procrit.com/
his injections are neupogen once a week.
Hi Theresa, just noticed your husband's Drs appt is tomorrow. Hope you get some of the answers you are looking for.
From a fellow NY sports fan...
didnt make it to the dr today. had severe thunderstorms, tornado warnings. almost blew the top of our gazebo off.
We're looking at a possible 18 inches of snow this week. Sounds wild everywhere.
Theresa, how are you holding up?
im doing better. andy seems to be in better spirits since he doesnt have to go to treatments. he is breathing better. he is talking a little, even though raspy.
its ironic how im doing the happy dance because he can breathe and whisper, and my daughter will have a friend over, take one look at him and say OMG he needs to be in the hospital, and i say...are u kidding--u should have seen him last week, he is improving!
Hey Teresa, I'm just getting back in town and saw this. My RO gave me a 2 week break (16 days) at 25 treatments (out of 35) and told me that he almost stopped again @ 30 due to the problems much as you describe. BTW, I had, still have, the "tan lines"
. Y'all hang in there!!
Kevin
thanks kevin! glad to know there are "others" lol. thats what i love about this site.