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looking for the foolproof (ha!) chemo/rad survival tricks (insider knowledge)

princessrobin's picture
princessrobin
Posts: 5
Joined: Aug 2010

I am headed to MDA-Houston tomorrow to begin treatment. I have been reading this board and find the support here and information here very valuable. I will just put out the request to give me what helped you get thru the treatment the best and what do you wish you had known then that you know now?

nellie67
Posts: 26
Joined: Jul 2010

I am currently being treated at MD Anderson and this place is awesome. All my doctors have been great as well as the other staff. One thing that took me a little by surprise is the chemotherapy. My first cisplatin infusion I wasnt prepared for amount of time I had to be there. My appt. was at 6 and I didnt get home until 11:30 and if you're insurance doesnt cover the 5fu pill you will have to have the pump to take home. As of now that is my least favorite part of this is having to carry that fanny pack around, its kinda a hassle. Try to stay somewhere close to the medical center and see if they have a shuttle available. Parking is terrible and expensive. The one good thing is that when u start your radiation they allow you to use a valet parking thats right at the radiation center its free and they give you 2 hours so if you need to do a blood specimen you can or pick something up at the pharmacy..

Since Im only 2 weeks into the treatments Im not experiencing any major side effects from the radiation. My skin is just now starting to get kinda pink. My doctor gave me some aquophor ointment for my innter thighs and outer genitalia area and also some ointment call lantiseptic for my bottom area. It smells gross. I went to gyno this week and she gave me some estrogen cream and a dilator for home use. On the weekends Ive been feeling pretty good so far, however I know monday is coming and I really dislike that chemo makes me sick thinking about it...ugh. One thing that helped me with eating is to eat cold stuff like yogurt(which normally i cant stand), puddings, protein shakes and anything cold. I have tolerated cooked stuff better now but at first I wanted to throwup just from the smell of stuff cooking. One other thing Id like to add and its a positive side effect is that the original pain I had coming here with is gone. I was having a really hard time sitting and alot of sharp pain, I was taking up to 9 advils a day. Now I sit for prolonged periods without any discomfort. That makes me happy and when Im in that radiation I have smile on my face cause I know its burning that cancer and even though I may suffer with the burns its killing it and for that Im like bring it on, same goes for the chemotherapy, it may make me sick and tired but Im like bring it on cause I know its killing that cancer and in the end of all this Ill be cured.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

1. Ask for periodic scans (cat) during your chemo/rad treatments and focus on progress such as the tumors shrinking or and disappearing. For example, lets say you hav 6 rds of chemo. After the 3rd round, you and DR will want to see the progress made both for any adjustments that may need to be made to treatment and your own confidence level.

2. When possible, keep busy whether that is walking, reading, spending time with close friend or pets, or any hobby you may have.

3. Request a nurse to consult for nutrition guidelines during treatment.

4. Ask for amends which is a anti nausea medication and can make a big difference in controlling nausea.

5. spend time here in CSN boards and chat with its supportive members

6. Dont underestimate your strength and spirit even as you go thru some difficult times.

7. Your not alone.

8. I found music and writing to be therapeutic, you may find it is for you too

9. Lean on the oncologist nurses for questions you have as they have more time to get into the details of your symptoms and how to treat.

10. Visualize your self getting thru the treatments and into remission as you begin to see the world around you as a place to love and appreciate

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Thanks also.
Very excellent advice.

sissy310
Posts: 300
Joined: May 2010

Cannot add anything more than what HeartofSoul said...wonderful advice.

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

I guess I'll add to the good advice you've already received. Even though I was given Emend and two other anti-nausea meds to take as needed, I was determined to hold off nausea before needing the pills at home. I would always wake up nauseated in the morning, so found that eating jello first thing in the morning helped a lot. I always had some made, but you can just buy it in the little cups. Having something in your stomach at all times can help curb nausea, so crackers, soda, hard candy are all good to have on hand. However, if you do feel nausea coming on, take the pills right away! When you use creams on your skin, just make sure all traces are removed about 2 hours prior to a radiation treatment, as some ointments can increase burning if not removed. Get plenty of rest and listen to your body. I was determined to go on with my normal activities during treatment--ha! Didn't happen. When you're tired, you need to rest. And one of the most important pieces of advice I can give you is to stay hydrated! Many people end up in the hospital because they are dehydrated, so don't let this happen to you. I drank water and made it a rule to always drink a glass of water after each time I urinated, so as to replace fluid lost. BM's will get painful, so I would recommend using wipes that contain no alcohol instead of TP, which is way too abrasive. Urination can get quite painful too and many people swear by using a squirt water bottle while urinating to dilute the urine. Just as you are voiding, squirt a bit of warm or room temp water on your urine stream. Mouth sores can become an issue. Rinsing frequently with water and salt or water and baking soda can help. If you do develop mouthsores, be sure to bring this to the attention of your chemo nurse or doctor, as there are mouthwashes and medications that can knock this out. Itching can be a real problem in the anal area. I found the most relief from sitting in the tub in lukewarm water with nothing added. Always bring to the attention of your medical team any issues that arise, even if you don't think they are serious. During chemo/rad, little things can turn into big things.

I can't really think of anything else right now, but if I do, I'll pass it along. I wish you all the very best with your treatment and I hope you'll update us as to how things are going. Take care.

Enaid Klom
Posts: 2
Joined: Sep 2010

Before finding this tip, I would dread the pain and burning when urinating. I tried squirt bottles but, they didn't work as well for me.

Use a sitz-bath 3/4 filled with cool/cold water. Dip your bottom into the water while urinating.

Additionally (this may sound gross, but was quite helpful) I found that if I slipped my hand into the sitz-bath between my legs and 'splashed' the cool water onto my vagina as I was urinating, the movement of the water helped to dissipate the urine hot spots and cool my vagina. Empty the sitz bath and repeat with clean water then blow dry on cool setting.

myscotties
Posts: 3
Joined: Aug 2010

Waiting for treatment to begin was one of my hardiest times. I just wanted to get started asap. I was very fortunate to find two oncologists who i feel are the best and trust my life with. Four weeks I have been dealing with this nasty disease and have encountered some of the nicest people during my treatment. I hope the same for you. I still work, got for treatment and live my live as normal as I can. I refuse to surrender to this disease. Don't let it get to you. Keep the faith. How you deal with it makes a big difference. I still have pain all the time, get tired, cranky etc. But that is life and I want to get well. Take care and good luck. I am stage III cancer.

nellie67
Posts: 26
Joined: Jul 2010

I am now starting my 4th week of treatment, going pee-pee is really starting to bother me primarily due to the pee-pee dribbling down on the vagina area as well as the area between the anus and vagina. Really burns and the only relief I was getting was taking a bath after, however I got a plastic cup and it works great. I push it up against my vagina not too hard and just pee in the cup, kinda gotta line it up right with the uretha but it keeps the urine from dripping down thus not too much discomfort. Its hard to take a bath every time you go pee esp if you are out in public or in the middle of the night. Hope this helps.
nell

z's picture
z
Posts: 1258
Joined: May 2009

Hi Nell,

Have you tried using a water bottle? If you squeezed the water out while your urinating it will help to take the acidity out of the urine. I remember how painful it was, and water really helped me. Your idea is good too, I say whatever works. Lori

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

Hi Nell--I can see how this would work. And think of it this way, for future trips to the doctor when you have to give a urine specimen, you'll be a pro! The bottom line is, do whatever works and eases your pain. Take care.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Robin
I was treated at MDA also. Tomorrow will be my one year anniversary of completing treatment and so far no sign of the cancer! Everyone has posted a lot of good advice. Each week along the way you may experience different things. It will get harder toward the end of treatment.

MDA will provide you with an appt with a nutrionist. Unlikely they will perform any CT scans during treatment. They prefer to wait till 60 -90 days post end of treatment because the chemo and radiation is still working and scans prior to that could result in false positives or negatives.

You are most likely going to get Cisplatin versus Mitomycin if Dr. Eng is your doctor. Cisplatin wasn't too bad but as Nellie said, the day you go is very long. You will have about two hours of potassium and magnesium IVs, then an hour of Cisplatin then two more hous of the potassium, mag, and I think saline or something. It's a boring process. They will provide you with food and liquids, TV, etc. Try to book your Cisplatin treatments at the Mays Clinic versus the main building. It's not as busy there and the rooms are a little bigger.

They will probably prescribe Imodium and other things. I thought I didn't need them. I was wrong. Once I started following doctor's orders things were much better. The radiation is a little strange - the position you will be in is awkward and somewhat embarrassing. But the technicans are very nice and very patient. MDA is huge, but I was very pleased with the care and attention I received. The doctor's PAs (assistants) are very responsive.

Do you have a place to stay? Are you coming from out of state? I also lived in Houston for many years and know the city (moved a few years back). Let me know if I can help in any way.

Wishing you healing and strength.

Liz

princessrobin's picture
princessrobin
Posts: 5
Joined: Aug 2010

I am 3 weeks into treatment at MDA, so far so good. With the many helpful hints I received from this site, I was not soooo surprised as some of the issues come up. I have the dilator, I have the squirt bottle, I have the lidocaine cream and some other creams to help with the rawness. I am focused on the positive and trying to find something wonderful in each day. The people here have been wonderful, the rad techs, the physician assistant are great.

I have adjusted to the positioning for treatment and do some stretches for my arms so it doesn't cramp as much. I am doing a behavioral health study for rectal/anal cancer patients which is requiring me to exercise 3 x a week which I think has been good for me.

I was afraid of week 3 as I was told things get worse and somethings have, but I have managed them so far. 3 more to go will hopefully find me capable to get thru it.

Thanks for all your help and advice. and I love hearing about people who have made it thru!!!

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