What is chemo like? share experiences

[cccubic]

My Mom age 70 was dx with stage 3c yesterday.  The dr. says they will do chemo before any surgery.  I live far away and want to be there to help my mom when she needs it the most so I'm trying to anticipate when that will be.  Can anyone share with me what the experience of having chemo was like?  When do you think a patient needs the most help?  Is it usually given over a long period?  How debilitating is it?  I would love to hear any advice for a concerned daughter.  How can I best help?  thanks

[cccubic]

KayLee1964  Thanks for the websites, They look to have some helpful resources, which I will explore.  I, too like to learn as much as I can. The more I know the more empowered I feel to make a difference. My mom, on the other hand has a hard time reading and concentrating when she is under stress, so I feel like this is something I can do....gather information and share it with her as she needs it.
I want to say THANKS for caring to pray for us.  I want to mention that I have been a hospice volunteer for a short while and we are adding a program called Transitions which helps care for those who have a terminal diagnosis but who are still seeking a cure, it is primarily involved with palliative care.  The reason I mention this is because just this week I went to some training and they mentioned something about prayer that was interesting.  This is a completely non-religious organization, but the trainer told us that some research was done.  A large group of people who were going to surgery were divided into 3 groups.  One group was being prayed for and they knew this.  Their recovery rate was faster than the norm.  Another group had surgery and was not being prayed for and their recovery rate was just average.  The third group in the study were having surgery, were being prayed for and did not know it.  Their recovery rate was faster than average like the other prayed for group.  It really makes me appreciate those who say they will pray for us, because there seems to be power in that.  Thank you from the bottom of my heart.

To Shewrites, that's a great idea about the cell phone.  My sis in law is going to be at the appointment and I have asked her to call me so I may listen in.  I'm so glad I can "be there", at least to the extent possible.

[shewrites]

Does your mother have a cell phone?  If she puts it on speaker, you can "participate" in her conference with the oncologist long distance.  

Otherwise, she would be smart to take someone along.  She'll get more information than she can absorb, and she may misunderstand some of it.  It's really a good idea to have someone else take notes, interject questions, etc.  

[KayLee1964]

I am not going to comment on the chemo because mine would have been much different from your mom's. I had stage 3A lung cancer that had already gone to the lymph nodes in my mid chest. I was told I had 6 months. I am now a two yr healthy survivor. Living and loving every day.
What I do want to share with you is a website about a type of care that is available though out her treatment etc.Also helpful for family members and caregivers. It is called palliative care. The website is  www.getpalliativecare.org. It would probably give you peace of mind and be very supportive for you mom when you can't be there.

There is also a free magazine called "CURE" cancer updates, research and education.Website is www.curetoday.com. I don't know about you but, when I was diagnosed I wanted to be as educated as possible. I picked up my first magazine in a hospital and loved it immediately. It comes out 4 times a yr. It is also for family and caregivers. I will say a prayer for you and your mom. I am not super religious but everytime someone said they would pray for me I got chills. Please don't forget to also take care of yourself too. If you don't you won't be any good to your mom either. Love and good thoughts are coming your way. KayLee

[cccubic]

These thoughts are all very helpful.  I gather that losing your hair, loss of energy, feeling nauseated and constipation are pretty much to be expected.  Anything else that's common?  My mom had an exploratory laparoscopy with biopsies on Tuesday and is getting out of the hospital today. I guess the oncologist is going to talk to her tomorrow. I wish I could be there for that, but it's not possible. There are so many questions I want to ask.  Thanks everyone for your support.

[helenl89]

I myself, would get very weak  by the 2nd and third chemo. Take the anti naseau meds, they do help. Make sure to drink lots of water, gatorade etc, to keep your electrolytes up. Try to eat right, to avoid anemia. It is very common sometimes to delay a treatment, if ones blood work is low. Don't get in a panic about this, it can be normal. As for the constipation, differnt things work differently for different people. This is trial and error  also , I hate to say I would get neuropathy in the hands and feet. Really drove me crazy. I would use luke warm water to soothe burn or cocoa butter, in the fridge. They say vitamin b helps to. Make sure she keeps asking questions, this is important. We are here to help, if needed

[marie3B]

A great answer given above.  I can't add much.  I will say that if the anti-nausea meds aren't helping as much as she would like report to the doc.  There are several drugsa available.  What works great for some of us may not work for others.  Different combinations can be tried.  

For my first chemo I was on Taxol and Cisplatin.  I got I/V Aloxi benadryl and decadron as pre-meds.  Also I had a 3 pill rx for Emend that was taken morning of chemo and the next 2 days.  I had no trouble with nausea first time on chemo.  

You may be worrying about her age.  I can tell you I sat next to a 78 yr old woman on standard ovca chemo.  She not only handled the chemo like a trooper, she kept us all laughing in the treatment room.  Her sense of humor was quite unique.   She completed all of her treatments and did get a remission.

I wish your mom and you well.  Please remember to take good care of yourself through all of this.  It is quite common for caregiver/family members to worry themselves sick and neglect their own health.  Your mom wants you healthy and so do I.  Marie

[shewrites]

Thanks for being there for her.  First and foremost, listen carefully to what she says -- and try to do as she asks.  

Encourage her to take someone along for her first chemo session.  It will probably go smoothly and she will probably feel okay that day due to the effect of the steroids she'll be given, but the first is the scariest one.  It's important, by the way, to take the meds they prescribe and to do it ON TIME;  I set an alarm that I kept on my desk for that purpose.  She should ask the doctor/nurses at the facility where she gets her chemo what to do about constipation, which can be a problem three-five days after the chemo.  She should put them on her "speed dial" just in case she gets nausea despite the meds -- I didn't but some people do.  I usually ate a "box lunch" during my chemo treatment, and that was never a problem.  It's better to eat a little all day than let your stomach get empty, I think.  Encourage her to have a "support team" on stand-by to get groceries or meds, etc., if she doesn't feel up to going out the week of her chemo.  She may not need this help, but it's nice to have some people on the alert.  

If she has the standard first-line chemo, she will lose her hair within the month following the first chemo.  It helps to cut it short before you start shedding, and it helps to find a beauty shop or other facility that sells wigs before you lose any hair -- that way, you can match hair color and style, which makes it less obvious that you've lost your hair.  (On the other hand, I have a cousin who bought a bunch of cheap wigs and experimented with colors and styles and just had fun with the hair thing.  Not my style, but I envied her spirit.)   Also available:  nice hats (some with bangs or falls attached), scarves, skull caps (good for bed, when your head can get cold), etc.  You can shop for that kind of thing wherever you are and send her a fun assortment.  Hair loss was my biggest trauma, and I think that's kind of common.  

Your mom can check with the local American Cancer Society and see what they offer.  Sometimes they have wigs, sometimes they can find someone to drive to chemo, sometimes they offer support groups.  Also check with the doctor and the hospital to learn what's available in the area.  

My chemo was every four weeks, but on this forum I'm reading that every three weeks is quite common.  She should ask the doctor how many treatments she'll get before they do surgery.  I'm thinking you'll want to be there for the surgery and a few days after she gets home.  Like all major surgery, she shouldn't do a lot of stairs or heavy lifting or housecleaning, etc.  And it's a bit painful getting in/out of bed, up/down in sofas, etc. at first.  I was able to drive after a couple of weeks.  She should do a lot of walking (indoors or out, a few minutes at a time several times a day).  If you can be with her for a week after she's home, assuming that's what she wants, you can probably help get the house clean/organized/stocked for awhile -- and organize whatever help she'll need as well.  It's a good guess that she'll have several more treatments of chemo after the surgery.  

Technically, you aren't diagnosed and staged until you've had surgery and the pathologist has looked at everything.  That means that she will not have an official diagnosis until after the surgery.  Which is why I think it's important for you (or a sibling?) to be there immediately after the surgery to provide support.  

Please keep coming on here and asking questions.  It's a lot to absorb all at once.  These days, doctors can do quite a lot for their patients, so go ahead and feel hopeful.  

Best of luck to you and your mom.