Rplnd

[dadmo]

The chemo isn't painful at all but please make sure you have all of the anti nausea medication ready for your home (he should also be getting taking potassium and magnesium). Getting a pik or chemo port isn't a bad idea, our oncologist looked at my son's arms and decided that the veins were great (he lifted weights) but as a parent it hurt to see him get stuck everyday and at the end sometimes the veins would give out and he would have to be stuck 3 or 4 times. The drip time will depend on the patient but it should be between 4-7 hours. As my son got further into treatment they had to slow the drip because it burned but his longest was about 6 hours and his shortest about 4 1/2.

If you want to talk just call (collect is fine)
Bill or Nancy Moses (she's better on the phone but she will cry)
201-445-2532

[w4lucy]

I've been watching this thread and just wanted to say I'm so glad to hear you were able to get into an oncologist and he is being proactive about the situation. My DH just found out he has t-c two weeks ago, so we're kind of in the same boat of everything seeming like a big whirlwind and trying to figure out the best treatment option, if we like his current dr, etc. Anyway, I just wanted to write a post to show you my support and let you know ya'll are in my prayers.

[boyce]

Port and chemo

The port was not bad at all. Short procedure (local anesthetic) implant sit. I had a sore arm for the weekend, but no major pain at all. My skin was verty needle sensitive, and I used a Lidocaine cream on the port before each treatment. (Slather it on heavily and cover with plastic wrap to prevent absorption). That helped quite a bit. But I know many others just take the needle with no problem.

My treatments were 4x BEP. Week 1 = 4-6 hours per day (M-F) in chemo (not uncomfortable, recliner, books, movies, etc.) Weeks 2 and 3 were 1 day for an hour for the Bleo. That's Cycle #1 and there were 4 for me.

Please count on the nurses to care for you and work to get ones whom you like.

I worked from the onc office the whole time with cell phones and remote internet. But t he last cycle was Really tough. Taste buds change, as you prob. know. Eating every 2 hours helped keep the nausea at bay along with Emend, Kytril and a cocktail of Compazine and Ativan. Kytril is about $100 per pill and worth every cent! Emend is a 3-pack that I took the weekend after Week 1 of the cycle and it's also very expensive, but works. Dr. often has samples as well.

Good luck to you...You can do this. It is hard and it is unfair..but it can be done as you see from these people!!

[mstlyn]

I've been watching this thread and just wanted to say I'm so glad to hear you were able to get into an oncologist and he is being proactive about the situation. My DH just found out he has t-c two weeks ago, so we're kind of in the same boat of everything seeming like a big whirlwind and trying to figure out the best treatment option, if we like his current dr, etc. Anyway, I just wanted to write a post to show you my support and let you know ya'll are in my prayers.

Thank you.
Your family is in my prayers too. I hope you get all the information you need VERY SOON as the waiting is agony.

[mstlyn]

The port was not bad at all. Short procedure (local anesthetic) implant sit. I had a sore arm for the weekend, but no major pain at all. My skin was verty needle sensitive, and I used a Lidocaine cream on the port before each treatment. (Slather it on heavily and cover with plastic wrap to prevent absorption). That helped quite a bit. But I know many others just take the needle with no problem.

My treatments were 4x BEP. Week 1 = 4-6 hours per day (M-F) in chemo (not uncomfortable, recliner, books, movies, etc.) Weeks 2 and 3 were 1 day for an hour for the Bleo. That's Cycle #1 and there were 4 for me.

Please count on the nurses to care for you and work to get ones whom you like.

I worked from the onc office the whole time with cell phones and remote internet. But t he last cycle was Really tough. Taste buds change, as you prob. know. Eating every 2 hours helped keep the nausea at bay along with Emend, Kytril and a cocktail of Compazine and Ativan. Kytril is about $100 per pill and worth every cent! Emend is a 3-pack that I took the weekend after Week 1 of the cycle and it's also very expensive, but works. Dr. often has samples as well.

Good luck to you...You can do this. It is hard and it is unfair..but it can be done as you see from these people!!

Your reply is very detailed and I like that. The drugs are terribly expensive and although I agree that when you're sick it is all worth it, but it's terrible that they are so high priced that they are out of reach for many people. I hope the insurance my son has will cover the cost of the anti-nausea drugs. I know it covers the chemo. Thanks for being so descriptive. If you can think of anything else LET ME KNOW!

[dadmo]

Your son will almost certainly be covered for the anti-neusea drugs. If for some reason he isn't have him check with the facility where they are giving him his chemo, they may have some available.

[mstlyn]

Ok good deal. I will check into that dadmo

[dadmo]

Robert:
One of your ideas never get's enough attention. Seek out a support group, I wish I had done that for my wife and son (this forum is my support group). It has taken 3 years to regain our lives. Perhaps with some guiding words and comforting thoughts we would have healed sooner. For the first time our son said that he isn't sleeping well (work related) and it wasn't from nightmares. Please find someone outside your family to talk to and it will be especially important when he is cured, once the whirlwind stop the emotions will really surface.

[mstlyn]

mstlyn:
From what you have posted your son will almost certainly need chemo. There are two standard chemo mixes they use for tc patients one is 3 rounds of BEP and the other is 4 rounds of EP. A round of chemo is 5 days of chemo followed by 2 weeks off, the effects are cumulative so your son will feel less well as treatment continues. I know how horrible this sounds but chemo today isn't what it used to be, the sickness is quite controllable and your son will feel lousy but not so bad that he will want to stop. My son said he spent many Sunday mornings at college feeling worse.
The fact that it has spread does not make it less curable and does not put him in a higher risk category. To be direct I wouldn't say it was caught early but it seems to have been caught early enough. My son was caught at stage II with spread to the lymph nodes and spots on his lungs he did 4EP and an RPLND and is now almost 3 year from diagnosis. I have no reason to suspect that your son shouldn't do just as well.

This is the post that I was looking for. The reason is that my daughter thought a round of chemo was 6 months; and her idea was that since my son will be having 4xEP it would take 2 years!

According to her, when her husband had lymphoma he had to have 1 round of chemo. He went 1 time every 3 weeks for six months.

It is actually 5 days on, 2 weeks off, 5 days on, 2 weeks off, 5 days on, 2 weeks off, 5 days on, 2 weeks off ... and then he will be done, right? So if he starts on Jan 29th, he will be done at the end of March. Yes?

[DianeE]

Hi mstlyn,

I've been following your thread and am so glad your son's
treatment will be started. As a mother of a cancer patient,
I know the ups and downs you are going through. Thank God
we had this site to turn to for information and support. My son
had the I/O, RPLND, and chemo, and being able to know what
to expect, made each part of treatment easier to digest.

As far as the chemo treatment, it could be long days for your son, so tell
him to make sure to have books, movies, game boy--whatever
will help him pass the time. My son needed extra fluids before
and after his chemo which made the daily sessions around six hours.
Intake of fluids is one thing that can't be mentioned too many times.
Your son will need to get used to drinking constantly during and after chemo
days. He'll want to flush the chemo out as soon as possible and
drinking is the only way to do it. The nausea drugs helped my son,
but he was plagued by acid reflux, and had to have Nexium added in
his IV during chemo. It was important for my son to keep away from
any foods that created additional acid because of the reflux. And tell
your son to eat whatever looks good. Lots of calories and as much
protein as he can get. Don't be surprised if he gains weight during his
treatment. Some of the guys do. My son, however, lost weight, so
it could go either way. AND, tell your son not to be shy about
telling his chemo nurses about anything that is bothering him, whether
it be physical or emotional. Even the slightest little thing is not too
small to mention. It is very important for the nurses to know everything
that is going on with him. And has been mentioned, he was told if his
insurance didn't cover any of the drugs, they had samples they would
give him, so he didn't have to worry about needing a drug that couldn't
be obtained.

And just to let you know, my son ended up in the hospital after each round,
but he was an extreme case. He just didn't take the chemo well, and it
actually was a relief to see him in the hospital. He perked up in a day
or two once he was on constant IV and was rested, so it really wasn't
a scary thing.

It won't be a walk in the park, but your son will get through this and will
be cured. It's so important for him to have family and friend support, just
as you have been doing. My son had an infant and a toddler at home
while he was going through his treatment, and his wife's family and our
family all pitched in to help in whatever way we could.

Stay strong and take care of yourself too.

Diane

[dadmo]

I know Diane just said this but it is very important. Their is nothing too small to tell the people at your local chemo cafe. If your son isn't sleeping tell them ,if he gets jumpy tell them, if he gets restless legs tell them, if he can't have BM tell them, if he is anxious before each drip starts tell them. The nurses are there to help but you have to let them know what you need.

[mstlyn]

I know Diane just said this but it is very important. Their is nothing too small to tell the people at your local chemo cafe. If your son isn't sleeping tell them ,if he gets jumpy tell them, if he gets restless legs tell them, if he can't have BM tell them, if he is anxious before each drip starts tell them. The nurses are there to help but you have to let them know what you need.

dadmo I know I read somewhere that it is your birthday so I would like to say HAPPY BIRTHDAY TO YOU! Thanks for all that you do!

[mstlyn]

Hi mstlyn,

I've been following your thread and am so glad your son's
treatment will be started. As a mother of a cancer patient,
I know the ups and downs you are going through. Thank God
we had this site to turn to for information and support. My son
had the I/O, RPLND, and chemo, and being able to know what
to expect, made each part of treatment easier to digest.

As far as the chemo treatment, it could be long days for your son, so tell
him to make sure to have books, movies, game boy--whatever
will help him pass the time. My son needed extra fluids before
and after his chemo which made the daily sessions around six hours.
Intake of fluids is one thing that can't be mentioned too many times.
Your son will need to get used to drinking constantly during and after chemo
days. He'll want to flush the chemo out as soon as possible and
drinking is the only way to do it. The nausea drugs helped my son,
but he was plagued by acid reflux, and had to have Nexium added in
his IV during chemo. It was important for my son to keep away from
any foods that created additional acid because of the reflux. And tell
your son to eat whatever looks good. Lots of calories and as much
protein as he can get. Don't be surprised if he gains weight during his
treatment. Some of the guys do. My son, however, lost weight, so
it could go either way. AND, tell your son not to be shy about
telling his chemo nurses about anything that is bothering him, whether
it be physical or emotional. Even the slightest little thing is not too
small to mention. It is very important for the nurses to know everything
that is going on with him. And has been mentioned, he was told if his
insurance didn't cover any of the drugs, they had samples they would
give him, so he didn't have to worry about needing a drug that couldn't
be obtained.

And just to let you know, my son ended up in the hospital after each round,
but he was an extreme case. He just didn't take the chemo well, and it
actually was a relief to see him in the hospital. He perked up in a day
or two once he was on constant IV and was rested, so it really wasn't
a scary thing.

It won't be a walk in the park, but your son will get through this and will
be cured. It's so important for him to have family and friend support, just
as you have been doing. My son had an infant and a toddler at home
while he was going through his treatment, and his wife's family and our
family all pitched in to help in whatever way we could.

Stay strong and take care of yourself too.

Diane

Diane,

Yes it does help to know what to expect from what seems small to the most important, so I love getting all the details.

What was going on that you knew to take your son to the hospital? I am worried that I might be jumpy and take him to the ER for things that he will just have to deal with at home.

I can understand what you are saying about feeling relieved when he was admitted to the hospital. I am sure it gave you peace to know that he was where he would be taken care of immediately if anything called for it.

My son already has acid reflux to some degree. He has never been diagnosed and treated for it, but he uses antacids.

He did make note of acid reflux on the forms when we went to meet his oncologist but the doctor did not mention it; so I will bring that up when we go see him again ..

Another thing I want to add is thank you for saying he will be cured.

I can never see those words enough on here.

Tammy

[dadmo]

Tammy:
He will be cured