My Niece and Cancer (some chemo questions)

[tiggerlover]

It has been a couple of weeks since I posted anything about my 11 year old niece and her cancer, mainly because it has been such a roller coaster. The latest news is definitely not good and not what we were expecting. The original tumor they found on her cheek (really inside her mouth) is not the only tumor, the cancer has spread and has surrounded one of her lymph nodes. Originally they were going to do surgery to remove the tumor, but now they say surgery is not an option. They are going with a 3 drug chemo for 10 months in addition to radiation. She is going into NYC again on Monday to have the tubes installed. As someone who knows nothing about chemo and radiation (and I hate to ask stupid questions at a time like this of my sister) but are the tubes inserted so they can administer the chemo drugs? Are the tubes bothersome? What is chemo protocol, how often is it administered or does it vary from patient to patient. Does a person automatically get sick after the first round? Do all patients lose their hair? My sister and her husband are beside themselves, my BIL is definitely not in the right state of mind because he asked the doctor if he caused his daughter's cancer. My sister at this point is being the glue that is holding the other two together, but she is slowly unravelling.

On another note, my mother, who is ill herself, is losing it too, I am 36 years old and have never heard my mother cry until today, and I am doing all I can to help, but can do only so much from 4,000 miles away. Mom understands even less than I do about cancer and chemo and when she heard they couldn't do surgery she automatically thought my niece was going to die. I explained to her that I thought chemo and radiation were to shrink and kill any tumors and that it wasn't necessarially a death sentance and she seemed to feel better after that. I think all of this has scared mom and she has finally agreed if her doctor didn't have any health news to her mystery illness this week that she would finally take a referral to a specialist in NYC.

Thanks for letting me vent a little. I knew coming here would be okay because my DIS pals would have answers to some of my questions, and I don't want to burden my already overwhelmed family with these questions. Thanks for listening.

 

[debster812]

I don't have (nearly) all the answers, but here is what I do know:

After the chemo and radiation, the tumors may have shrunk significantly enough for them to operate.

The tubes are (I think) for them to administer the chemo, cuts down on some of the needles.

Not all patients become ill, or lose their hair from chemo. It really depends. Just as the chemo protocol depends, they will have some sort of a schedule for her. It may be 4, 5, 7 days a week, it's hard to say.

I'm certain there will be some more knowledgeable DISers coming along, that will have more information for you.

My best wishes to you and your family. I cannot imagine how hard this is on everyone.

 

[regi]

I am so sorry to hear about this. I am currently dealing with a cousin who has been diagnosed with terminal colon cancer at 36 years old. It is a terrible blow. I cannot answer your questions, but I found this website to be helpful.

http://www.cancer.org/docroot/home/index.asp

I hope you can find some of your answers here. My mom also had cancer and has been in remission for 12 years, so please don't think of this as a no win situation. My prayers are with you and your family and your precious niece. Good luck to all of you.

 

[Magix]

The tubes (or "pic lines" - don't know if I spelled that right) are for administering the chemo drugs. Your niece could possibly be getting 24 hour chemo simultaneous to her radiation treatments. That's what they did with my mom during her second bout with colon cancer (we're on our third bout currently). The lines don't tend to hurt, although the area where it exits the skin can get annoying, mostly because of anything they cover it with. If she does get 24 hour chemo, she'll get a pump about the size of a walkman to carry around with her that will make some noise, but nothing bad - she and her family will get used to the sound of it very quickly. The radiation treatments can cause some problems in the treated area, but your doctors will be able to help you with any creams or other methods of making the areas feel better. My mom's treatments got rid of the tumors, without any additional surgery. Granted hers came back, but your niece's case may be much different, and hopefully much better.

The side effects of the chemo vary depending on the drug, the dosage and the person. My mom has been through three different kinds of chemo and has not had any huge problems with any of them - some nausea, thinning hair, tiredness. Nothing that can't be dealt with. The best thing to do is check with your niece's doctors and get a list of the drugs she'll be receiving, then look them up on the internet. Usually, you'll be able to find the manufacturer's insert information and get all the possible side effect info there - just keep in mind that not everyone gets all the side effects! Don't let anything scare you!

The more research you do, the better able you'll be to deal with what's happening and what could happen. Remember that it's important to the welfare of both yourself and your niece to stay positive and keep everything in perspective. Don't overthink this illness or its treatment. Do pay close attention to what the doctors say and don't start worrying about what they don't say - they won't keep anything from you. They are here to help you - ask them questions and don't feel embarassed about being lost in the pool of information you've been given. They will understand and will do all they can to help you be comfortable with what's happening.

And, most of all, be sure to come here and to your friends for support. Talking about what's happening will help keep things in perspective.

 

[LaGaviota]

I don't think I can give you any specific information regarding her type of chemo, but I'm a 5-year survivor of breast cancer this month and I will tell you a few things that I learned from going through this first hand.

My chemo therapy consisted of 7 months of 2 weeks on chemo and then 2 weeks off. After those 7 months, I then did 2 months of daily radiation. Chemotherapy can vary based on the type of cancer, the growth of the cancer, the patient and the doctor. Also, in alot of cases, they don't do chemo and radiation at the same time.

I didn't get really sick - just extremely lethargic - to the point where I could hardly walk anywhere. Also, I didn't lose any of my hair. The effects really are dependent on the individual drugs being used for chemo treatements. Definitely do some research on the short-term AND long-term effects of the chemo they are going to give her.

The most important thing I learned was that even though people tell you that they will be supportive - they generally are supportive for about 2-4 weeks - and then they disappear. This is just from my experience and may be different for other people. Just be prepared for the unexpected reactions that you may get from friends and even family over the long-term.

I hope that helps just a small bit. Your family is in my prayers.

Take care,
Anna

 

[wdwnutze]

I have no answers for you but just wanted to let you know that your niece will be in my thoughts and prayers. It must be a very scary time for you family.

 

[Kitty 34]

I don't have any answers either but just want to offer my prayers for your niece. {{{{{{HUGS}}}}} to you and your family.

 

[helenabear]

I too have no good answers for you, but I wanted to let you know that your neice, mom, you and all of your family are in my thoughts {{{HUGS}}} to you and your family.

 

[BibbidiBobbidiBOO]

I have nothing to offer but prayers for all of you and her.
I do know some people that are going through cancer or other serious illnesses have used the Caringbridge site to create a page. It is a way to keep friends and family in touch and also to receive messages from others. Perhaps when they feel ready they might like to create a site here. I have read how much it helps the family cope. http://www.caringbridge.com/

 

[Dan Murphy]

I think you have some good, accurate answers here, Debbie, to your questions. I would have answered virtually the same as several above. My best wishes and prayer continue with your niece, TL, and also with her family, you and your mom too. {{Hugs}} to everyone.

Anna, just wanted to take a moment to welcome you to the DIS, good place it is. My wife, Marie (Lady M here on the DIS) is also a five year breast cancer survivor. She too had aggressive chemo (did lose all her hair), followed by radiation, with these protocols initially preceded by surgery. She is doing great today, but like you, extremely lethargic, even today.

With taking a quick look at your profile, I can see that breast cancer does indeed strike young people too. Never too young to be vigilant, IMO.

And also, I see you are headed to WDW for a wedding in pink in a few days, God bless and congratulations.

Now, TL, I'll return your thread back after my hijacking, just always take the opportunity to 'preach' about those BSE's and mammos. Again, my very best for your niece.

 

[browneyes]

I don't have any answers, just wanted to send some {{hugs}} and pd your way.

 

[Disney Doll]

The lines they are talking about placing are probably Hickman catheters, which get implanted into a person's chest wall. They do not hurt once they are in, and can be left in for a long period of time...we once had a patient who had a Hickman cath for 6 years. Basically, it saves her getting needle sticks a million times, because once you access the catheter once, you can give drugs and draw blood through it.

Often, they will give chemo and radiation, shrink the tumor a little, and then do surgery. It really depends on the type of cancer, the location, the rate of growth etc.

As far as hair loss...it really depends on the type of chemo they administer. Some cause hair loss, some don't. It depends on her reaction, the chemo schedule...it depends on a lot of things.

One word of advice I wil give your family is to write all these questions down. And when you ask the doctor, have a second pair of ears there to hear the answers, and take notes. It helps to be able to go over everything later. We have had patients that have asked permission to tape record sessions with the doctor, just so they can play it back later and hear what they missed during the conversation.

 

[Mishetta]

Debbi, I just want to tell you how very sorry I am that your sweet, young niece has been diagnosed with cancer. I am hoping for the best outcome for her (her family) & your Mom.

Sending you lots of pixie dust & prayers, my friend.

Love & Hugs,

Rose

 

[janette]

My nephew had one like Disney Doll describes, really not uncomfortable at all much better than having new IV's every time. The only time they had problems were the few times they went to the hospital via the ER, the ER nurses tended not to be as familiar with the cath port and would want to do a regular IV. My nephew & sister did not appreciate that and soon learned how to tell the nurses what needed to be done for him.

They removed the port after the treatments and an additional scan a couple of months after. It seemed like a closure of that chapter when it was removed

The chemo and treatments do vary with patients. My nephew had a schedule of treatments pretty early that covered the next year, it did vary some as they will change it if something doesn't work as well or if something seems to work better.

I would expect her to lose her hair, since they are doing different types of treatments it may not happen right away. My nephew lost his after they started a certain type of chemo. We were visiting one night at the hospital and he was just pulling handfulls of hair out. It was driving him crazy because it was falling into his clothes. My DD's decided it looked like fun and started helping, soon it was pretty much all gone, it was that immediate. His mom brought in a shaver the next day to get rid of the few wisps of hair that remained.

My thoughts and prayers are with you all as you go through this, I know it is one of the hardest things I've ever had to watch a child go through. My nephew has always been amazing a survivor in so many ways.

 

[Mamu]

Debi thoughts and prayers heading your families way. Check your PM box.

 

[GailT]

I will not moan and groan today when something minow goes wrong. I dob't have any answers for you but you and you neice and family are in my thoughts. Why does something like this happen, she is a kid with a life ahead of here. God Bless you all ((((HUGS))))

 

[janette]

Wanted to add that one thing I didn't expect with my nephew at first was the amount of time he spent in the hospital. He had osteosarcoma and I'm not sure if it was just for that type of cancer but he was hospitalized for every chemo treatment. Often spending almost a week in the hospital. Also because the chemo weakened his immune system he was hospitalized anytime he ran a temp when he got sick between treatments.

 

[Tiger Fan]

Before having cancer I thought chemo itself was a drug. I soon learned that there are MANY kinds of chemo and it varies for which cancer you have. I would suggest doing research on the net to see and learn about which chemo your niece will have. As for the tubes it could be either a pic line or a port. I have a port and it's in my chest and not any bother at all. A pic line will be easier to install, but it does extend out of the skin and requires some attention for care. Both are wonderful that they will prevent her from lots of needle sticks. They will be able to medicate and draw blood without additional needles. I can't even imagine the stress and worry about this happening to your child. Please know that my prayers are with you and your entire family each day.

Lisa

 

[RAV]

Your family is in my thoughts. I hope everything works out for your niece.

 

[Boots]

Keeping your niece and the family in my thoughts and prayers. Many, many hugs to all.