Hi, new here, I start chemo and radiation monday

Wisteria83

Mollymaude said:

Froggy

I had a port put in, so I didn't have a pic line. Taking a shower or bath with the fanny pack is tricky anyway. I put the fanny pack on the floor beside bathtub and just took a shallow bath for those five days. Can you cover pic line with Saran Wrap? 

The distance you have to travel sounds tough. I had a thirty minute distance to go for my treatments. Sometimes the ride was painful because you are sitting on the treatment area! Do you have anybody you can stay with in the town you're getting treatment? If you do that might be a good back up plan if you just don't feel up to the ride later on in treatment. 

Car ride

Try to park in the shade too.  The last thing you want to do is sit on a carseat that's been baking in the sun when your bottom is burned.  At the least, have a towel to put over the seat when you sit on it!  Bring a pillow and recline on the rear seat as time goes on.  I found it to be more comfortable and sometimes I even dozed off.

Wisteria83

Froggy32 said:

Day three of radiation

went well. In and out before my actual appointment time.  The nurse gave me a goody bag filled with a bad pad, w spray bottle, Vaseline, wipes, oatmeal bath. Gloves, pads, and gauze bandages. I wish every day would be as quick as this one. They have a program to help out with expenses and I got the application for it, but we make a little over the allowed amount. Oh well, we tried. I hope everyone that needs it apply for it and get it with no problem. 

Not qualified either

We didn't qualify for any assistance either.  It sucks because we barely scrape by and they tell us that we make too much...but just a hair over the allowed amount.  I had told my husband at the time that if we were divorced, I would qualify with no problem and everything would be covered 100%.  I was only partally jesting.  There was no time for that though.  No one wants to wait months for treatment just to save money.  Instead, we make payment arrangements and pay what we can monthly.  As long as we make a consistent effort and keep the lines of communication open, they are happy and we can still afford food.

Mollymaude

Froggy

If your husband gets a service connection from VA then he is a "disabled veteran" and that might be helpful to put in the application for assistance as well as "fixed income". The worst they can say is no.

Froggy32

Mollymaude. I know what you mean

 I started filling out the applications last night and figured out that the most we pay out for basic living expenses is not enough to come close to helping out in the situation. We evidently spend too much on unnecessary items. Lol. We own 2 houses and don't have mortgages on either, no credit cards or car payments, my hubby doesn't like to owe for anything. He had a good business that he owned for several years, even if we don't have any thing in savings, we have a pretty good income. I think we will make it ok without help. As long as I don't end up having to get a lot of medicines that my va insurance won't cover. I may need to look into the Medicare program to pick up the copay on that.Right now there isn't very much that I have to pay out of pocket for. Thanks for all of your help. I need to get my shower and get ready to go for next round. 

Froggy32

Mollymaude said:

Froggy

Just a thought but I would fill out the paperwork for the assistance anyway and include extenuating circumstances like how much your monthly costs are for both you and your husband's medications each month. Including medical supply expenses like the Depends and Ensure, etc. 

Ok. That might help.

He is on a ton of meds  but he is a veteran and goes to the VA hospital for all of it. It won't hurt to try though. Thanks. I have Medicare and va insurance too. 

Froggy32

Wisteria83 said:

Not qualified either

We didn't qualify for any assistance either.  It sucks because we barely scrape by and they tell us that we make too much...but just a hair over the allowed amount.  I had told my husband at the time that if we were divorced, I would qualify with no problem and everything would be covered 100%.  I was only partally jesting.  There was no time for that though.  No one wants to wait months for treatment just to save money.  Instead, we make payment arrangements and pay what we can monthly.  As long as we make a consistent effort and keep the lines of communication open, they are happy and we can still afford food.

Yes,

I would be well under the poverty level, if it went by my income alone. I barely get anything on soc sec, then they take over $100 a month for Medicare. Which I am very thankful for now. But we make around 10,000 a year over the level.

Froggy32

Wisteria83 said:

Car ride

Try to park in the shade too.  The last thing you want to do is sit on a carseat that's been baking in the sun when your bottom is burned.  At the least, have a towel to put over the seat when you sit on it!  Bring a pillow and recline on the rear seat as time goes on.  I found it to be more comfortable and sometimes I even dozed off.

Thanks

I already have a pillow in there. But there isn't any shade very close to the center where I go. It used to be a shopping mall.  I do have some sun shades I could put over the windshield if I need to though.

tanda

Froggy32

In addition to the nurses,....and how nice to give you a goody bag; perhaps they will give you some more supplies as treatment progresses, there are probably social workers attached to this facility.

Social workers usually know about community resources(ie volunteers, Meals on Wheels ,etc)...also the local chapter of the American Cancer Society.  The biggest problem seems to be the 100mi round trip commute 5 days a week!. Am Cancer Society has a volunteer driver program, but I think it would be in a more local area. 

Many hospitals and cancer centers have arangements with local hotels/motels for discounted rates for people in treatment,  The last 2 or 3 weeks of radiation are very unpleasant; perhaps you could stay in a nearby hotel/motel for a few days.  Social workers should know about this, or you could call and talk with a manager of a local motel.

Please contact your social worker, nutritionist/dietician, etc; I'm sure that there are a nymber of resources that would be useful.  

Froggy32

tanda said:

Froggy32

In addition to the nurses,....and how nice to give you a goody bag; perhaps they will give you some more supplies as treatment progresses, there are probably social workers attached to this facility.

Social workers usually know about community resources(ie volunteers, Meals on Wheels ,etc)...also the local chapter of the American Cancer Society.  The biggest problem seems to be the 100mi round trip commute 5 days a week!. Am Cancer Society has a volunteer driver program, but I think it would be in a more local area. 

Many hospitals and cancer centers have arangements with local hotels/motels for discounted rates for people in treatment,  The last 2 or 3 weeks of radiation are very unpleasant; perhaps you could stay in a nearby hotel/motel for a few days.  Social workers should know about this, or you could call and talk with a manager of a local motel.

Please contact your social worker, nutritionist/dietician, etc; I'm sure that there are a nymber of resources that would be useful.  

Thanks, I will check into that

the further I get into treatment. Right now I am still feeling ok other than being tired when I get home. They have a retreat really close to the treatment center that you can go to to rest after your treatments. I am going to check it out . I don't think it matters what your income is for that. 

Kmessier

Froggy

I'm glad to hear that your first week went okay and and that you did pretty well, I'm sorry your fatigued and that the commute is so far your in my thoughts and prayers!!

Froggy32

Kmessier said:

Froggy

I'm glad to hear that your first week went okay and and that you did pretty well, I'm sorry your fatigued and that the commute is so far your in my thoughts and prayers!!

Thanks.

My arm the picc line is , is really sore and heavy feeling. And I have started getting weak in the legs, when I stand very long. Is that a side effect of the chemo? I see my dr Monday. I need to bring this up to him.

 

Froggy32

I didn't think I would get another round of chemo this week.

But they hooked up another one today. I thought the procedure was a week of it then a week of rest from it. Then another one next week if needed. I am disappointed.  Also got a prescription for phenergan. In case I need it. I have a little nausea 

Froggy32

I hit twice again

But they hooked up another one today. I thought the procedure was a week of it then a week of rest from it. Then another one next week if needed. I am disappointed.  Also got a prescription for phenergan. In case I need it. I have a little nausea

eihtak

Froggy32...

Hi, 

While there have been a few people here whose treatment schedule does not follow protocol, as mentioned earlier, the usual is: Chemo during week 1 and 5 along with 6 weeks of radiation. I would mention to your doctor that that is what you've read and question why yours is different. He may have a very reasonable explanation and I am curious as to what he says. 

I had a port so can not tell you much on the picc line, but when my husband had a picc line he did experience feeling more of what he described as a weakness in that arm. If the heavy feeling increases I would call your doctors office and report that along with your leg weakness rather than waiting until Monday. These are likely just normal effects of the chemo, and we all react slightly different to the same treatment, but best to notify your doctor and error on the side of caution.

I will have you in my thoughts as you move through this for restful, uneventful days that lead to healing and recovery!

katheryn

mp327

Froggy32

I would definitely question the chemo schedule with your doctor(s).  When I had my second round of chemo, the chemo nurse almost hooked me up to the 5fu pump without giving me the infusion of Mitomycin first.  I asked her if I wasn't supposed to get it first and she admitted her mistake, which could have greatly affected my response to treatment.  Please ask!

Froggy32

mp327 said:

Froggy32

I would definitely question the chemo schedule with your doctor(s).  When I had my second round of chemo, the chemo nurse almost hooked me up to the 5fu pump without giving me the infusion of Mitomycin first.  I asked her if I wasn't supposed to get it first and she admitted her mistake, which could have greatly affected my response to treatment.  Please ask!

What does the mitomycin do

I don't know if I got that or not.   Thanks. I will go in there today and ask about it.

eihtak

Froggy32 said:

What does the mitomycin do

I don't know if I got that or not.   Thanks. I will go in there today and ask about it.

Froggy32...

Hi, 

The Mitomycin is another chemo drug given via IV (port, picc line) right before the 5FU pump that you wear home. There are other drugs used in place of Mytomycin such as Cisplatin (which is what I was given) but still the same 2 drug process. 

It is your right to understand clearly the medications that you are given and why so do NOT be shy in asking questions regarding these. Please let us know what you find out.

katheryn

Froggy32

eihtak said:

Froggy32...

Hi, 

The Mitomycin is another chemo drug given via IV (port, picc line) right before the 5FU pump that you wear home. There are other drugs used in place of Mytomycin such as Cisplatin (which is what I was given) but still the same 2 drug process. 

It is your right to understand clearly the medications that you are given and why so do NOT be shy in asking questions regarding these. Please let us know what you find out.

katheryn

Ok thanks

I will, getting ready to head out in a little while. 

 

Froggy32

I asked them about the burning and tingling.

She checked my bandages and site and said it was probably tight from the bandages last night, but wasn anything wrong with it now. I totally forgot to ask about the chemo schedule. I have to go back tomorrow, so maybe I can remember this time.

eihtak

Froggy32 said:

I asked them about the burning and tingling.

She checked my bandages and site and said it was probably tight from the bandages last night, but wasn anything wrong with it now. I totally forgot to ask about the chemo schedule. I have to go back tomorrow, so maybe I can remember this time.

Froggy32...

Hi,

I'm glad she checked the site and felt all was good. I used to write down questions, big or small, because I knew I'd forget once there. Just remember to take the list, lol....maybe put in a pocket, purse, or bag that you know you'll have with you. Good luck tomorrow.

katheryn