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Father-in-law newly diagnosed and getting the runaround...


JennaG

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Hi all,

My father-in-law was recently diagnosed with NSCLC. He first sought treatment in early December because he had lost his voice, but the doctors stalled and stalled on testing and have dragged this out until just last week to finally tell him that he does have lung cancer.

Now the problem is that they're stalling treatment, too. He had an appointment today to start chemotherapy, and when he showed up, the doctor claimed there had been a mistake and that he'd have to go elsewhere for treatment. (He is a veteran and the VA hospital here is ridiculous.) We got two different stories and I'm trying to figure out which one is true.

First, the doctor told my in-laws that he couldn't start chemo yet because they have to do chemo and radiation on the same day-- and that they need to do radiation for 5 days in a row, so it always has to start on a Monday because no one is there to do treatments on the weekend.

Then my husband went to see the doctor and he changed his story entirely, saying that he could start radiation on any day and it would be OK to not have treatments for 2 days over the weekend and just go back on Monday to finish.

Because of the way they've just stalled and pushed my FIL aside for months now, I have no idea what to believe. Is it true that chemo and radiation need to happen on the same day to be effective? Is it true that he should have treatments 5 days in a row, or does it matter if he does, say, 3 days, then off for 2 days, then 2 more days? We don't know whether to push them to start him tomorrow, or to wait for Monday. Any advice would be appreciated.

Thank you.

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Welcome to the site. You have come to a great place for support and help. I am not a doctor and probably know less than most about all this but in my case I started radiation on a Thursday along with my chemo. Radiation was 5x a week and chemo was 1x a week. I did skip a week of radiation and still did my chemo. Maybe that will help a little. I feel I have some of the greatest doctors. I am sure others will also post some info for you.

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In my case I had chemo and radiation but there schedule is different...........radiation was 5 days a week, Cisplatin was at most 1 day a week and Etoposide a couple, not every day. Perhaps it is different with the drugs he is on.

Mine were during the same "period of time" but not always on the same days. They told me the chemo made the radiation more effective

Donna G

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Welcome. I was tattoed on Friday for the alignment of my radiation and started the actual radiation the following Monday and receive chemo on that Friday. I was in the hospital at one point during my treatment and they continued with the radiation treatment but I did skip one chemotherapy session. One they get your dad a schedule you will be so busy keeping up with things that time will fly by. It is the waiting and feeling like you are in a "Keystone Cop" movie that is the hardest part of this fight.

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Welcome to the board--

He needs to start treatment as soon as possible. While radiation is daily (and yes you can skip days- they are closed holidays etc.) chemo will be another schedule. What they mean by doing it together is that he will have a better response if both treatments are started but they don't need to both be done the same day. Because of my husband having vena cava syndrome he started radiation immediately to shrink the tumor off his vein and then chemo followed the next week. Radiation was done every weekday until completed.

I notice that many times veterans on this board are not getting the best of care - this is unacceptable. Do whatever you have to do to get him started.

Every day they delay the cancer grows. Have they given you a stage or any information on the type of cancer, which chemo etc.? Good luck and keep us posted.

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Welcome, Jenna. I am not quite sure what they are telling you..............if radiation is 5 days a week and chemo is one ~ doesn't it make sense that they would be on the same day at least once a week? I started radiation on a Wednesday and was supposed to start chemo on Thursday, BUT they couldn't find my paperwork, so I had to go back on Friday. I had the rad every week Mon - Fri and chemo on 5 consecutive Fridays.

Remain vigilant and proactive........you and your family will be the ones MOST responsible to keep things running in the right direction. Don't be shy about questions and voicing your concerns.

Kasey

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Hi Jenna: Welcome to the boards. There are some very knowledgable and caring people here ready to help you. I have no experience with the VA but my husband was treated with chemo and radiation within the same period and some weeks he got radiation and chemo on the same day, however his onc started weekly chemo immediately and by the time he was simulated and tatood (sp?) three weeks went by before radiation started. You can read his profile to see how the time lines went. Radiation is typically every day, Mon thru Fri, and they are usually closed weekends and holidays. His radiation treatment ran over the 4th of July when they were closed, and one day the machine broke down, but they just tacked the treatments on to the end of the schedule, so he finished 2 days later than expected. No big deal. The only other thing I can add is that you must be an advocate for your father and insist on treatment and acceptable time frames. Be nice to the doctors, but let them know you want straight answers and no runaround re treatment. Good Luck

Wendy

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Thank you so much! They said they wouldn't start chemo today because they want both chemo and radiation to start on the same day... but I think that was just another excuse to put him off. Everything I'm reading seems to say it doesn't have to start on exactly the same day! Just within the same time frame.

I believe he is stage 3a at this point (T2 N2 M0), and I don't know the type of chemo yet. He has three tumors (two on his lung and one on his trachea (?) -- paralyzing his voice box). I haven't spoken to his doctors directly, so everything I know is second and third-hand. He is a fighter with a great attitude, but today's latest fiasco just really upset him. He was ready to start treatment and is so frustrated that it's up in the air again for when he'll start and where he'll be treated.

I have another question, if you ladies don't mind answering...

If you're going to feel sick from chemo and/or radiation, how quickly does that happen and how long does it take to subside, usually? I'm asking mostly because I'm pregnant with his first grandchild and due in 3 weeks... if he starts chemo next week, I'm so afraid that he's going to feel lousy when she's born. I'm hoping this can be a bright spot for him and that he'll feel up to seeing her.

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Maurice was given steroids to take the night before and the morning of chemo. He was superman for 2 days then crashed and burned. He never had nausea but there are lots of people here who will be able to help you with that issue. I think a new granddaughter in his future is wonderful and just the upper he needs right now. Good luck and God Bless

Wendy

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Sorry for all the questions at once, but I'm so thrilled to find a place where people are so responsive and supportive.

My other question is about the port and simulation. He's getting the port put in tomorrow, then scheduling the simulation (again, no one explained any of this to him and they had scheduled him to start chemo today!). Anyway, I also wanted to know if this is going to push things back again. Can he start chemo and radiation right after the simulation, or is that usually different days?

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I started chemo on a Wednesday and radiation the following Monday. I did radiation 5 days a week and chemo 1 day a week. I also switched chemo days midway through. Missed a week of radiation and 2 weeks of chemo because I was very sick, but made it up in the end. I felt fine for about 4 weeks of treatment, then started feeling bad. Worst was about the 6 and 7th week and lasted a few weeks past. Then I started going uphill again. No matter how sick he is, he'll feel great seeing his grandchild. I don't ever think I was so bad that I couldn't have done that. Though he may not feel well enough to travel. Hugs, Liz

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My radiation was daily(M-F) for 6 weeks. I never had a port put in because of insurance issues so I can not help much with that. I was never really sick from chemo I was tired about 3 days after chemo and that was it. Like Liz said it started hitting me harder on my 7 and 8th week. I hope you can find out everything you need to know for your father so he can get the best care.

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Jenna--You may get better answers to your questions if you start new threads for different topics. It seems like some of your later (and very excellent questions) are getting lost with the ones you asked in your first post. Want to be sure that everyone sees them all. ;)

I hate that the VA has given him the runaround.... It makes me livid. I know with Active Duty we have a patient liason that we can call to file complaints with. Is there such a thing for veterans? If so.... DO IT! This is unacceptable.

As for the treatments and when the sickness starts, it can happen right away... But, from observation, it seems that the hard-core ickiness often comes and goes, and you really won't know how or when he is going to react to his treatments until that happens.

No matter what when you have that baby it WILL be a bright spot for him. I promise. I called my Mom when she was in the infusion room when my daughter was born, and I don't think she came off the ceiling, well.... ever about her new grand-daughter. ;) The important thing is that you will be able to put that little one in his arms. There's no way that couldn't be a lift and a bright spot. I promise.

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Welcome Jenna!

I don't have alot of different replies than those that have already posted. I just wanted to welcome you here!

There are many nsclc survivors here who will share their experiences with you. I also second what Val says about filing a complaint. Oftentimes it's the squeeky wheel that gets things in motion-

If you're going to feel sick from chemo and/or radiation, how quickly does that happen and how long does it take to subside, usually? I'm asking mostly because I'm pregnant with his first grandchild and due in 3 weeks... if he starts chemo next week, I'm so afraid that he's going to feel lousy when she's born. I'm hoping this can be a bright spot for him and that he'll feel up to seeing her.

It really just depends on the combination of chemotherapy drugs he will be taking. They all act differently and first-line chemotherapy is usually the most aggressive.

I can share our experiences-

Now keep in mind, not everyone will get these side effects-some people experience only alittle fatigue! and my dad had small cell LC, but he had EVERY side effect known to man!

He would feel fine until about day 4, be violently ill for 1-2 days, have 1-2 days to recouperate and then the whole process started over again.

It took some time to sort out the right anti-nausea meds that would work for him, and there are many, sometimes it takes time to find the right one.

Dehydration is also a major concern for folks on chemotherapy/radiation. My dad could drink water like a fish and somehow still get dehydrated. IVs to rehydrate him helped alot.

As for your baby that's coming in three weeks...CONGRATULATIONS!!! No matter how your FIL feels during treatment, the baby will be such a bright spot and inspiration for him!

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Jeanna ... if I am understanding correctly the "sims" he will get is the tatoo we refer to which shows them where to aim their radiation ray guns. LOL ..... different folks respoond differently. I was lucky and never did get nauseated but did get very worn out by the time the 7 weeks of radiation was over. If your FIL has a good attitude then I believe he has won half the battle already.

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[JennaG]...My other question is about the port and simulation. He's getting the port put in tomorrow, then scheduling the simulation (again, no one explained any of this to him and they had scheduled him to start chemo today!). Anyway, I also wanted to know if this is going to push things back again. Can he start chemo and radiation right after the simulation, or is that usually different days?

I believe the simulation you mention relates to the radiation, not the port. My port was tested during the implant surgery and was useable immediately -- the few days' delay before starting chemo was due to the availability of the oncologist I had requested. But while I haven't had or needed radiation as yet, I did have a consultation with the radiation oncologist and his staff. I think they used the term "simulation" when describing a first and rather lengthy session (without radiation) which involved detailed measurements of the body, marks on the skin, and construction of shields for areas to be protected. If that's the simulation you're referring to, it shouldn't have any bearing on when chemo starts as long as radiation can start in the same general time frame.

Though I'm a veteran, I haven't had any dealings with the VA medical system myself -- since age 65 I've depended on Medicare/Tricare -- but we have friends who use the VA facilities here and who seem relatively satisfied with their treatment. Maybe your husband needs to get involved again. There should be someone there (maybe the doctor he spoke to earlier) or a veterans ombudsman (often a state employee) who understands the VA bureaucracy and is willing and able to bird-dog this issue until it's resolved. My best wishes and Aloha,

Ned

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