Sooooo, we've had an interesting past week. My Dad hasn't had chemo in nearly 2 weeks, due to low white blood cells and dehydration. He goes in today to hopefully get his chemo. Also, he hasn't had radiation since last Thursday!!! They closed early on Friday (for Good Friday), so that was expected. Well, since Monday the radiation machine has been broke.
So, I guess all these people needing radiation just aren't getting it this week.
Kind of frustrating, because we just want to get this all over as soon as possible; however, I do think this little break is good for him. He is at the halfway point. Does this break in radiation affect anything? Did any of you have a break?
Also--my Dad decided he should get a feeding tube, mainly to supplement for extra calories/water he can't get down by mouth. My mom called on Monday morning about that. She was told they would call to schedule his appointment to get the tube....here we are on Thursday and still haven't heard from them. We're hoping they can still do it laparoscopically, instead of making a large incision and full blown surgery.
Also, my Dad is waiting for this medicine to come in (cream for his neck) and they are shipping it to his house. Well, I guess it has to be signed for and my parents will be at the cancer center the majority of the day. So, I'm taking my daughter over there to hang out and play and hopefully, the medicine will get dropped off and I can sign for it.
Ok. There's my latest ramblings. Thanks for listening....er, reading.
Shannette,
Is your father being treated at a CCC? The lack of follow-up is odd.
To my knowledge, a few days break in treatment is not that big a deal. It allows you to heal as well and sometimes that's what's needed to get over the hump and finish. However, it's been a week and I don't know what the deal is at that length of time.
Concerning the PEG? Again, the lack of follow-up is odd. I'm personally hoping I won't need one. I'm holding my own 1/2 way through.
"T"
As mentioned previously, it's not advisable for anyone, but sometimes unavoidable, to have a break(s) during treatment unless "per your doctor." Any unplanned breaks can have an effect on the efficiency of radiation treatment, and gives a chance for the tumor to repopulate. These days are usually "made up" if one can really say that, by coming in a 6th day or adding them at the end, and not sure if they can change the treatment plan now to have daily rads 2x daily, and with the neck tissue issues. There is really nothing that can be done, other than to start treatment as soon as he can, and when the center is open. Although, mine sent us to a sister hospital, mask and all, after several days due to power loss from Sandy, being these machines use to much power for a power generator an handle. Good luck with everything.
He is at a cancer institute, which I guess is a CCC. Praying they have the machine fixed and all continues as planned today. I believe they were going to discuss the feeding tube more with the doctor today and take a look at his weight. I've heard some people say their pain peaked around 4 weeks. I think my Dad is wondering if he has hit the worst of it or not. If so, he thinks he can go without one. Do you think with these 4 weeks left of radiation, he'll get a lot worse?
The last two weeks, and two weeks after, are usually the worst due to the cumulative effects. Also, after the 5th week or 25 treatments, the effectiveness of radiation starts to decline, and to compensate this, they somehow increase the radiation, and so do the side effects increase, but many have done without feeding tubes, and some not, due to many variables involved.
Unfortunately radiation is cumulative and his health will deteriorate as he continues treatments. The very best thing to try to avoid it from becoming so difficult is to keep up with good nutrition and hydration every single day. No excuses or skimping, just get 2500 calories and 48 oz of water in every single day, if more can be taken in thats even better.
Be a squeaky wheel and call them back when you dont hear from a doctor. Also, just because a place is called a cancer center does not mean it really is one of the top comprehensive cancer centers in the US. Some facilities have tricky names to make you think they are more qualified than they really are and in reality they are just for profit centers which are in it for the money. It doesnt sound like this place is on top of things at all with their machine breaking down for so long, most top cancer centers have several machines so breaks dont happen.
Best wishes!!!
Well, the radiation machine is fixed and my Dad will be back to treatments on Monday. I do believe this break has been good for him. He has been able to heal a little bit and drink his shakes really well. Of course, now he has decided not to get the feeding tube. He thinks with this break, he's gotten enough strength to get through these last 3 weeks. I pray so. If things get too bad, he'll get the tube but I know it would be great for him if he can make it without.
He did discover today that his hair is starting to fall out from the chemo. My husband is going to give him a buzz haircut this evening. Was hoping he wouldn't lose much hair, but oh well. It'll grow back.
Just gotta get through these next 3 weeks....
Remember...3 weeks of tx left, but the radiation keeps working for the same amount of weeks of tx. It will get pretty tough here soon. Not to be a downer, just realistic.
Here for you,
Kathy
Sounds like your Dad found an attitude adjustment knob and turned up the volume
It will be a great accomplishment and boost him up for recovery.
I have 3 weeks left as well and no PEG. It's my goal to make it without one. My team was adamant about not having one. If it's absolutely necessary then yes, but they want me to push through.
Haven't had any hair loss but then I wouldn't notice a difference anyway
"T"
It's probably more the taxol causing the hair loss, than Cisplatin, not to mention the nape of neck, sides from radiation. I had taxotere twice, and had hair loss each time. The last time was in Oct/Nov '12, and still see hair around the bathroom, so it's thinner now than it was pre-cancer three years ago, but was lucky, still am lol, to have a full set of hair at 52. It will grow back. Good luck.
There is always the nasal tube for people that only need it for a short time. That can easily be done without a major surgery. Its also easier and less painful to remove.
Best wishes to your father!
Gave my Dad his haircut last night and it looks good! I kinda thought it might be traumatic (haha), but I guess for a man it isn't too bad. He just got a super short hair cut. He was balding, anyways.
He has definitely made the decision to try to make it without the tube. His radiologist isn't even pushing him to get it. Basically, he said if he can make it without one, that would be best. My Dad figures if his weight loss becomes a problem, they'll force him to get one anyways. Yes, we understand his body will be broken down from the chemo and what not, but this is his choice. My Mom said she is tired of having this conversation with him. He is pretty set on his decision. I know he will be working hard all weekend to get as many calories in him as possible while he is on this break. He said he has actually gained a pound and a half in the last couple days.
We'll see. I know everyone is different and everyone has a different amount of tolerance for what they can handle. I also know my Dad is smart enough to know he can't let himself waste away and he will get the tube later if his eating becomes a major problem. I know if he can get through this ordeal without one, it wil be such a triumph for him--mainly psychologically.
I hope your father is one of the patients who can struggle thru without the tube. Not everyone needs one. It is really a very individual decision and you have heard mainly from the pro-tube members. This used to be a huge discussion around here!
Just remember the nasal tube that I mentioned above. It can easily and quickly be inserted and also removed. Its for someone who wont need the tube for long term needs.
Good luck!!!
Christine--what is considered short term for the nasal tube? Thanks for throwing that out there as an option, as well.
I think Davidcpa had his for about 3 weeks. I would have to guess anywhere from 1 week to 2 months would probably be ok for a nasal tube. Ive seen a few members have theirs about a month.
Its a good back up plan. Keep it in the back of your mind and if the time comes where your father is struggling bring it up to him.
Shanette
Christine's post reminded me that as the major "I don't need no stinking PEG" warrior in the PEG wars, I have been remiss in not supporting your dad's decision more vigorously. What the pegophiles simply cannot comprehend is how meaningful, what a major psychological victory, how important it is to small subset of patients to get through TX without a PEG.
Part of it is ignorance of some doctors, that even late in TX, a PEG can be inserted by interventional radiology in a simple 15 minute surgery using a fluroscope. They make a very small incision precisely over the optimal part of the stomach, then insert the tube from the outside, inflate the balloon and it's done. Not even full anesthesia usually. since many doctors only know of the endoscopic way, they don't think to check with other surgery departments.
But your father is so close to making it now, Encourage him and please do not make light of his "victory". When I started giving out "imaginary medals" to those of us who made it without a feeding tube, the reaction was outrage from caregivers who mistakenly felt I was slighting the courage of their patients and their patients struggles. But then when I joined OCF, it was easier to advocate getting quack therapy than to say you could make it without a PEG.
You are a great caregiver and tell your dad, his imaginary medal is wairing for him.
Charm
Thanks alot, Charm. You know, my Dad is definitely smart enough to know that if he isn't getting enough nutrition/losing weight too fast he will need one. He is fully aware of that, and wouldn't fight getting one if it comes down to that. He just wants to try and do it without and all we can do is support his decision.
I really do like hearing all sides to this issue. I think it's good to be well informed. I do wish more people would post who have made it through treatment without one at all, although I realize there may not be many of you.
Thanks again, everyone.
Hi Brandi,
I know I sound like I'm pushing for it, but that was because he was already having some trouble. Now that he is getting fluids at the office, he might very well do ok. Kevin had his but hated it and got it out as soon as he could.
Your Dad is a tough guy and ready for battle. This gives him something he DOES have control over. That's a good thing.
Kathy
Kris has had a PEG twice now. He is reluctant to have his removed. I think he thinks it will jinx him
It is fortunate that he has not had it removed as due to aspirating recently he is now having to use it again. Hopefully only for a few weeks.
I don't understand all the drama of should you shouldn't you ? It really is no big deal. Kris says it doesn't bother him at all. Mind you he has a Mickey which sits flat against the abdominal wall.
Tammy
I liked it so much, I had two peg tubes! I dont think mental attitude, phycical attributes, toughness has anything to do with not needing a feeding tube, but rather from the radiation dosage amount, areas radiated, bilateral instead of ipsilatral, the tumor size, types of chemo, concurrent chemoradiation, redirridation, type of surgery, etc. and other cormibities that matter more to be able or unable to eat by mouth. All the well wishing, postive thoughts or determiunation doesn't amount to much, just as the same as it does for curing cancer or other severe illnesses.
Brandi
As you can see ,the recent posts validate my position that the majority of OCF just cannot understand what your father and I feel. Please let him know that he is not alone in his feelings. We have had posters get the PEG "just in case" and they never need it. People vary and this will not be the last time a majority dismiss the needs of a minority. Probably a good thing your father does not post,,or else he might react as I did and relaunch the PEG wars. In a way, I am glad that I did not find OCF when I was getting my first treatments since I probably would have dismissed this wonderful caring community as narrow minded bigots unable to acknowledge that many doctors advocate against a PEG. As it was, I could say, well it worked great for me and that's a fact
Of course, it turns out that the minority of us who went thru without a peg were mostly gentle souls who did not want to cause dissension. So I spoke up loud enough for all of us
Charm
I do believe what Paul said--it all depends on each person's specific circumstances. I think the main reason my Dad wouldn't get on here is because he doesn't want to be comparing his situation to any one else's. He is the type who doesn't like to "take people's word" for things. He just has to try something out himself before making a decision. And, like I said, it isn't that he is 100% against having one--he just wants to try to get through this treatment without one. Just one less procedure for him to go through and one less thing for him to deal with. He starts back up with radiation today. 3 weeks left. I'll let you know how it's going.
Best wishes with everything!!! Im sure everyone in yoru family is anxious for this whole thing to be finished so your father can return to his regular lifestyle.
Good luck!
Yes, Christine. He said he wants a burger so bad! We told him we'd catch him up on his eating as soon as he is able to!
Hi Brandi - Looks like your Dad is coming down the home stretch with Tx getting close to being over! My son is in the "no peg" group but when the doctors mentioned the peg, we hadn't found OCF yet. My son, my daughter and a nurse friend of mine were all there at the meeting with the Cancer Team and they left it up to Paul whether he wanted it. Your mention of your Dad wanting a burger so bad struck a chord with me thinking about mhy son's sore mouth and taste problems during Tx. One day I saw him getting very close to his chicken broth and smelling it. I assumed he thought something was wrong with the broth but when I asked him about it, he said he had discovered that he could really enjoy the smell even though he could not taste and that smelling was a lot like the pleasure one gets from tasting. Don't know if this would work for your Dad in the same way or if it would just be painful for him to see the burger and not be able to eat it. Just thought I'd mention it in case it's something to try - or not.
Hopefully your dad gets through this all and it sounds like he has the gumption to do so. I think pegs are a tool to be used if necessary. I personally had one as I wasn't really given a choice. It was standard practice at the hospital, and the told me they wanted me to have one. I didn't have to use it, but it was there if I needed it. Well all in all it was useless to me as I wasn't able to tolerate the feeds and took everything by mouth. I could afford the weight loss, and lost about 20 lbs. The best part was the psychological boost I got from having it removed 2 weeks after finishing treatment.
best of luck.