Anyone with a decent chemo experience?

mgm42 · February 2008

If you have had a decent chemo experience would you be willing to share? I realize that chemo is a very individualized treatment and that it has many, many side effects. I may be facing chemo and have nightmares about it. If you've had a relatively decent course of chemo, please tell me about it. I think it would help tremendously. I'm not looking for "pie in the sky," just some words of reassurance that's its not the end of the earth. Thanks. Marilynn

Unknown · February 2008

So far, I am halfway through. It has not been the end of the earth. I have worked every day. Things have come up and I have come here or elsewhere when I have problems and I have found solutions. Keeping a positive outlook is so important. For instance, on my worse days of chemo it is like I have the flu. If I was told it was the flu I would stay in bed and watch Oprah and not get bent out of shape. When it is chemo your mind starts to reinterprtet your symptoms emotionally as well as fearfully. Don't be afraid. Don't live the entire chemo experience in one thought. Let it spread itself out. I read a cancer survivor book one afternoon and it knocked me out to have to live one woman's year long experience in one afternoon. One day at a time.
A book that I did find helpful is Uplift by Barbara Delinsky. It has a lot of women sharing their experience and tips in short paragraphs that feels almost like exchanging recipes.
Looking back from here (and I am not done yet!) I found that I have experienced more than I thought but that none of it has been as scary as I thought. And, there are some good times. Like the incredible kindness and understanding of the chemo nurses. I look forward to the actual infusions because I get to be around people who understand and support me and even pamper me a little. For instance, there is this one elderly gentleman who volunteers at the chemo place just to bring (slowly!) the patients a cold drink or hot tea. He is so serving, so giving,it brings tears to my eyes to think back on it. Make it a point to look for things to touch you positively. Act like it is a frantic sale at your favorite store....what can I grab from this mess.
You know, I am finding I could go on and on, trying to find words to help you or explain it. So lastly that is my thought for you. You may be overwhelmed, but sometimes it will be with love.
Best wishes. Check in this discussion board often for every little thing you may need.
Whoops! One last thing. Have you heard about Y-Me? It is a volunteer org. you can call 24 hours a day and speak with incredible BC survivor women who will share, support and hold your hand. Phone number - 1 800 221-2141.
Your sister, Joyce

mgm42 · February 2008

unknown said:
So far, I am halfway through. It has not been the end of the earth. I have worked every day. Things have come up and I have come here or elsewhere when I have problems and I have found solutions. Keeping a positive outlook is so important. For instance, on my worse days of chemo it is like I have the flu. If I was told it was the flu I would stay in bed and watch Oprah and not get bent out of shape. When it is chemo your mind starts to reinterprtet your symptoms emotionally as well as fearfully. Don't be afraid. Don't live the entire chemo experience in one thought. Let it spread itself out. I read a cancer survivor book one afternoon and it knocked me out to have to live one woman's year long experience in one afternoon. One day at a time.
A book that I did find helpful is Uplift by Barbara Delinsky. It has a lot of women sharing their experience and tips in short paragraphs that feels almost like exchanging recipes.
Looking back from here (and I am not done yet!) I found that I have experienced more than I thought but that none of it has been as scary as I thought. And, there are some good times. Like the incredible kindness and understanding of the chemo nurses. I look forward to the actual infusions because I get to be around people who understand and support me and even pamper me a little. For instance, there is this one elderly gentleman who volunteers at the chemo place just to bring (slowly!) the patients a cold drink or hot tea. He is so serving, so giving,it brings tears to my eyes to think back on it. Make it a point to look for things to touch you positively. Act like it is a frantic sale at your favorite store....what can I grab from this mess.
You know, I am finding I could go on and on, trying to find words to help you or explain it. So lastly that is my thought for you. You may be overwhelmed, but sometimes it will be with love.
Best wishes. Check in this discussion board often for every little thing you may need.
Whoops! One last thing. Have you heard about Y-Me? It is a volunteer org. you can call 24 hours a day and speak with incredible BC survivor women who will share, support and hold your hand. Phone number - 1 800 221-2141.
Your sister, Joyce

You've given me some sound advice and some courage. Thanks so much. Your a real doll. Hope your chemo finishes up soon and that you are back to your former self ASAP. Hugs, Marilynn

survivor51 · February 2008

Hey Marilyn,
I have been there and can you that I was honestly scared to death. First I was tired from a double mastectomy and tired of test and doctors in general. Waiting in waiting rooms is not picnic and then it is waiting for the test results each time. Filling out all the forms, etc. Then finding out that chemo was expected. It all just swirls in the head. Then fortunately you have wonderful friends and you have to tell the story over and over. I totally agree with Joyce. I was honestly pleasantly surprised with how wonderful the nurses, doctors, assistants, and even the secretaries. I took double chemo and have finished. I can say that the chemo really wasn't nearly as bad as I had expected. The first session was fine but afterwards I did not drink water and that is the key. I did fell like a bad flu and went to the oncologist. They gave me fluids and meds and that took care of it. After that, I drank WATER. Plan to just sit/lay around afterwards. The day of chemo was absolutely fine. It did not make me ill. I did bring a dvd player and watch a movie during chemo. I had it plugged in 11-5. I ended up getting some funny movies and my ear phones. The nurses are fantastic. I took lifesavers, small bag of crackers, water. Wear something very comfortable and they have blankets that feel great. You sit in a comfortable recliner and they have pillows. You can have friends come in and out if you want. The day after, they give you a shot, can't remember the name. I heard that keeping a schedule is a must. I had all my chemos on a Thursday, shot on Friday, and Pretty much stayed resting until Monday. I was fortunate to have one of those craftomatic beds and kept it raised. Then I simply put pillows under my regular bed so I was at a slight incline. Chemo was fine for me. I did loose my hair but after I accepted the fact, it was not bad. My hair is returning and I feel great. I still get tired and it is important to rest when your body tells you. Keep coming to this sit for support and get a small group of friends that can help you out. I hate people to help but it was important for them because it not only helped me but helped them with my process. I did not throw up once or have diarrhea. I saw an acupuncturist that is also a psychotherapist and that helped a lot. The key is attitude. Keep in touch, your sisters are here and there is no question or thought that is bad or wrong. I can say all your thoughts and fears are real but when you look back, it was all doable. Angela

manna1qd · February 2008

Like everyone else, I was scared about going through this surreal experience. I had four rounds, three weeks apart of adriamycin/cytoxan. That was almost seven years ago.

Lost my hair, had a beautiful auburn wig that brightened my face.

Loved the nurses, thought of the infusion as one of strength. Took the time to rest, read, talk to the nurses. Rested at home for a few days after. I had enough help at home: mother or mother-in-law for the house/kids; neighbor took my four year old to preshool; church family brought suppers and four angels cleaned my house better than I ever did in one day!; hubby was keeping a regular schedule and kept the atmosphere in the home positive/normal. I attribute my positive chemo experience in general to accepting that help so I could rest and not think about anything but getting better. It was emotionally hard at times, but doable.

The chemo has a cumulative effect. The worst of it for me was just not wanting to do anything but plant myself in bed, make it to the dinner table, eat a bit here and there. I just felt wiped out physically and emotionally. I had a very hard time having visitors the few days after. I just couldn't pay attention due to the fatigue. I had nausea after treatment three, one episode of dry heaves after #4. I did have chemo brain. Email me if you want more info. Overall, I regained normal plus energy in between treatments and got an awful lot done. I felt great, actually.

I had a porta cath due to world's worst veins so getting the treatment started was a breeze for the nurses and hands free for me. One of the patient's was very encouraging and I could engage in conversation if I wanted to. That was supportive.

I equate chemo with having kids. I heard lots of horror stories about labor but mine went quick and relatively easy. I always like to share my labor and chemo stories because I know some people have an awful time of it and it scares the newbies. I did not. Thanks for letting me share.

mmontero38 · February 2008

Hi Marilynn:
I have to say I had a decent chemo experience. I was given Cytoxin and Adryomicin which are very tough but I handled it very well. From Day 1 I told myself I would not get sick. I was queasy and the oncologist gave me anti-nausea medicine which helped until by very last treatment which unfortunately made me very sick but that was the only one and I was done. I was lucky my blood cell counts stayed high and they did not have to suspend my treatments or give me neulasta to continue my treatments. I lost a lot of my hair after the 1st treatment and that was ok. I buzzed it off and went on my merry way. Spent $500 on a wig which I only wore 3 times (2 weddings & 1 funeral) and other times just wore a baseball cap or totally bald. Great news was you didn't have to shave, (ANYWHERE) Unfortunately, that didn't last too long and I am now back to shaving and waxing (ouch)!!! My hair is now 1 1/2 in long totally curly (use to have stick straight hair) you can see me on my page

mmontero38 · February 2008

Sorry Marilynn, i was previewing and hit post instead of edit. I had my treatments on Friday and was good to go by Monday. I was able to work the whole time I went through treatment. I also had the treatments every 3 weeks so in all it was not a bad experience. Your experience will depend on the type of chemo medication you are given. Hope this helped. Lili

KathiM · February 2008

It's not the end of the earth. I promise.

I'm not going to pull any punches, day 3 after infusion seems to be the day that, if you do have a rough ride, this will be it. BUT I drank BUNCHES of water the day before, day of, day after infusion, was infused on Wednesday afternoon, so the only time off was one afternoon...day 3 being then on Saturday.

It IS survivable. Which, honestly, is more than I can say if the cancer is left totally untreated. Once thru, you can get back to your life. I worked all thru this, being self-employed, it was a must. But I also took great care of myself.

Hugs, Kathi

3cbrca · February 2008

Hi Marilyn
I did have decent experience - it wasn't fun, but I was lucky. They told me at the clinic that it is different for everyone and the same drugs and course of treatment affects everyone decently. I didn't do it consciously but somewhere decided it wasn't going to slow me down. I had chemo before surgery which I think is a different experience from those who have it after surgery. I was in general good health and didn't have the physical trauma of surgery. I continued to swim. I went out for coffee the next day with a friend and was bragging that I had great sex on the first night of chemo (A/C)! I did have hand and foot syndrome with the A/C and my onc offered to give me a week off, but I didn't take him up on the offer - I wanted to be finished! I took pain meds on and off and stayed off my feet as much as I could. I then had 12 weekly Taxol and the only really side effects to that was being tired and some muscle pain in my legs. I was one of the lucky ones and I think that is all it is. We can only do our part which is take care of yourself physically, listen to your body, rest when you need it.
Good luck
She

seof · February 2008

I don't volunteer to share a lot with survivors because I think my experience has been unusually easy, but since you asked, I will tell you.

I was diagnosed in May 2007. I had a boiled-egg sized lump in the right breast and some lymph nodes were involved. My Oncologist wanted to do chemo before surgery because it would be easy to tell what drugs would work for my unique body, as opposed to having to rely on statistical research. (with a lump that size it was easy to tell when it got smaller). I did weekly infusions of herceptin with Taxol. I got antinausea drugs in the infusion and filled prescriptions for more to have at home. I read about all the potential side effects and expected to be in bed several days a week. As it turned out, I did get slightly nauseous about 3:00 am the morning after infusions, but not ill enough to take the meds, and it was gone by the time it was time to get up. I ate what I wanted and worked full-time (I am a Speech Pathologist in a public school). I did take afternoon naps after school, but otherwise did what I wanted. by the end of the 1st 12 week regimen, the tumor was not visible by ultrasound, and the lymph nodes appeared clear as well. The Oncologist continued the same treatment another 12 weeks, then mastectomy on 12/21/07(I got double mastectomy, other side was preventative due to family history).

Cancer cells were found in the pathology report after the mastectomy, so I am now on a new regimen of Adrimyacin and Cytoxin. I have been warned that Adrimyacin (nick-named "red devil") may make me more nauseous. I have had one out of 4 infusions (every 3 weeks this time). So far nausea has been a bit worse than the first round (I took 1 nausea pill per day the first week) and I have been a bit more tired, but I will be going back to work tomorrow (after 6 weeks off due to the surgery) and I expect to continue working full time.

Side effects do tend to be cumulative. I lost my hair slowly, and had some discoloration of toenails. The hair has begun to grow back since I was off chemo for about 4 weeks for the surgery, but it is supposed to come out again with the new drugs. I personally prefer to wear hats instead of wigs, or au naturale, but you will make your choice as you go.

Best of luck to you, may you have it as easy as I did, or more.

seof

caligal · February 2008

I started chemo on nov 12 with 4 adriamycin/cytoxan every other week. I had to take time off of my full time job (I am a server at a ski/golf resort, can't be around that many people) I also work part time at the local radio station & luckily I was able to pick up a couple more hours) any way back to the story. I worked the day of the chemo (prior to) and then took the following day off. I had a wicked bout of nausea but I think i didn't take thee nausea meds at the proper time. I battled fatigue for the most part for the first round and the neulasta made my bones ache. The fatigue was the hardest thing to deal with. Being a very active person that is the most difficult thing I have had to deal with, working 5 hours then having to go home and take a nap. Or just get tired at the drop of a hat. Most of the problems that I have had have actually been with the nausea meds. I was taking compazine for nausea and one time after I took it I couldn't swallow!! I took a trip to the er and just had to wait for the drug to wear off. I sucked on lozenges and drank water but that was a long night. Right now I am on taxol/herceptin. Yesterday was my 4th out of 12 treatments. I haven't had any probs with that except for fatigue, but not as bad as with the a/c. My blood counts have gotten low, but they are slowly improving and the docs think it might be residual from the a/c. The only other thing I had a problem with is the benedryl that they gave me during the infusion. Benedryl causes you to get all jittery, well I felt like I was going to jump out of my skin. It was the worst I have felt during the infusion process. My doc lowered the dosage and I have felt fine since. I have been on a lot of boards and I know I am one of the lucky ones. After this round of taxol/herceptin I will have radiation then I will I go to herceptin only once every 3 weeks for 13 cycles. I have read a lot of breast cancer boards and I know I am one of the lucky ones with little or no side effects(but when I did have them they were doozies). Hang in there sister, like my friend says before you it all of this chemo stuff. My journey started on September 18 that is when the doc said "its cancer" I had a lumpectomy on the 9th of October,2 days after my birthday then I had the port put in on the 6th of November. Thats my story. I can't wait until all this chemo is over, the port is out and I have my hair back.

Thanks for letting m share Marilynn

Mel

chenheart · February 2008

I also had a decent chemo experience! The first chemo was the absolute worst~ I was so frightened, and having that IV taped to my hand was overwhelming to me. I cried like a baby.
That night, with my bedroom all soft, fluffly, soft-lights , and oh yeah~ a "just-in-case-puke-bucket", I crawled into bed. My friends and family were there to love and support me. And guess what? I didn't ever throw up! Of course I lost my hair, as you will read most of us did...
My biggest set back was the cumulative fatigue. I went from tired to exhausted to someplace only the writers of the Twilight Zone could have conjured up. And even that didn't stop me from going to picnics, outdoor concerts, dancing...I just learned to plan and pace .

Now it is 5 years later~ I survived! As will you! Once the initial fear passes, and you have the knowledge that the chemo is doing battle with and killing The Beast~ you will settle in and just do it!

Hugs,
Claudia

Anyone with a decent chemo experience?

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