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Not Tolerating Chemo Well Not Tolerating Chemo Well

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  #1  
Unread 04-08-2003, 07:47 PM
Not Tolerating Chemo Well

After post-chemo days 3 and 4, which were full of mind-numbing bone pain, I thought I would feel better. And on the morning of day 5, I thought I did.

But by evening, I was in worse pain. I spent the weekend in and out of the bathroom, unable to eat anything, unable to walk without pain, barely able to move, not able to go (or able to go only with horrifying abdominal pain -- even after Senakot and Collase), and crying hysterically because of the pain.

I cried so hard and for so long that when my mom went back upstairs, she came back down and said that my crying had made my dad cry.

In desperation, a friend rushed over with some medical marijuana. My dad (the teetotaling doctor) had to borrow a pipe from a neighbor. I am not a smoker. But smoking this it is the only thing that has worked. Yesterday, I was able to eat a little something after four days of not being able to eat anything. I was also able to go sit outside for a while. Today, I have eaten a bit as well. Potato chips and onion dip. And a Hostess apple pie.

If I crave anything, my mom runs to get it. We don't even care what it is anymore. The goal now is to get food back into me. Half the time, though, I can't eat it by the time she gets back. I feel so badly. But somehow, with the medical marijuana, I can get down potato chips and onion dip (???) and a few other things (tomato soup, apple pie).

I can't even look at foods that I ate during Days 1-4 of chemo. It's almost as though I will never be able to eat them again.

I talked to my chemo doctor and he said if it's working, keep smoking it. I'm now surprised that I hadn't been told about this before. I wonder if it could have saved me from what I feel have been 2-3 of the worst days of my life.

Would steroids help? An additional day of hydration? I am not sure I can go through this again. Seriously.

***Admin. Note: Medical marijuana is legal in some localities; however, Hystersisters.com does not endorse the use of illegal marijuana and would caution members against it's use."
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  #2  
Unread 04-08-2003, 08:05 PM
Not Tolerating Chemo Well

Huge s SirenSong

I am sorry you are having such a difficult time. However, chemo is mandatory for surviving ovarian cancer stage IIIc. No two ways about it. So don't even think about stopping. Even with optimal debulking there are seeds hidden around. And the only up side to epithelial ovca is that it is very chemo sensitive. So at least we have that on our side.
It sounds as though constipation was a large part of the problem.
Next chemo session start the laxatives the night before and continue for three or four days. Not to induce diarrhea, but just to act as a stool softener.
Perhaps additional steroids would be of help. But they are not without their own long list of side effects.
Extra hydration definitely sounds like a good idea. Sometimes women are actually hospitalized over night for their chemo.
Perhaps IV antinausea drugs would work better for you.
Have you asked about zofran.
Perhaps you should just make up your mind that the next three months are going to s--- for you. But there is an end in sight.
Normal life will return for you. Look at me. I am living proof.
This Saturday it will be two years since the ultrasound that turned my life upside down. And truly, life is wonderful again for me. I am back to work parttime as an RN in the ICU where I have worked for almost thirty years. And I have gotten so involved in ovarian cancer advocacy. I am hoping to sway you with me once your treatment is done. I am confident that you can do this. There are alot of us out there holding your hand and sending you hugs and prayers.

karenann
  #3  
Unread 04-09-2003, 04:55 AM
Not Tolerating Chemo Well

Of course your father had tears in his eyes. I did too! My heart goes out to you. Chemo is not easy. Sometimes you are fooled the first day or two, but days 3 and 4 were always the worst for me.
Whatever food looks good to you, is what you should eat. Twinkies are o.k., when it comes to chemo. I went through chemo for breast cancer, and so many women swore to the positive effects of marijuana and could not have managed without it. It is unfortunate the government regulations are so strict about it, even for medicinal purposes.
It sounds like those chemo soldiers are fighting hard to kill all of those cancer cells. Unfortunately, there is some friendly fire on some of our good cells as well.

Hang in there. It is tough but then again so are you. My thoughts are with you. I am off to the Castle today. I'll be back in 5 days. I hope things get better quickly for you.
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  #4  
Unread 04-09-2003, 06:26 AM
SirenSong hang in there

I am wishing you strength to get through the next chemo sessions and all the prayers and hugs...karenann had some great advice. I haven't been through it yet but I know you will triumph over this...


gucu
  #5  
Unread 04-09-2003, 09:14 AM
Go With What Works

I will tell you that each chemo is different--I only had the bone pain the first time--after that on chemo 2 I had one twinge, took Extra Strength Tylenol (not about to face prednisone again) and that was it. Zofran is good for nausea--ask for it. I didn't get ANY anti nausea meds after my first couple taxol/carbo--when I did vomit on #3 they got me compazine suppositories and lorazepam--no more problems. Your taste will change--I recall after one chemo peanut butter, a staple, tasted like dirt--and things you liked you won't and odd tihngs you will like. As for the MJ--from someone who's never smoked it but at her job typed hundreds of drug arrest reports--go for it if it helps. I plan to use it at the end if I have to without qualms. I do think #1 can be the worst--don't think it'll be this way all the way through. Also, when I had single agent carboplatin starting last August for recurrence, #1 wasn't too bad--I had low counts for #2 and had to wait a week, then marginal counts and had to have the dose lowered--between #2 and #3 I was so sick I said at #3 I couldn't go on...well, I finished all 8 and here I am NED today. Wasn't a picnic--needed blood three (almost four) times and sometimes it was a week before I could venture out twice a day--but I made it. We all hit a bad chemo (just think how those cancer cells feel--that pain and nausea is whatever ones were left dying off) and then a better one. Ellen
  #6  
Unread 04-09-2003, 11:36 AM
Not Tolerating Chemo Well

SirenSong,

Please tell your oncologist all of the symptoms you had with this chemo. There are many things that can be tried to make you more comfortable the next time -- some of them need to be started at or even before your next chemo, though, so have a chat with the doc on your next visit


While I did not go through chemo, I nursed my mom through her ovarian cancer chemo (runs in the family). Here is what I learned.


--zofran is great. My mom took it orally the evening before, and got it in her IV during her chemo. And then took it twice again after. For her, it was amazing. It is fairly expensive - about $30 a pill, but I'd have paid 10x. It doesn't work well if one is already nauseated - it prevents nausea better than it stops it.


--your doc should give you scripts for medications for symptom relief so you can have them on hand - the compazine suppositories Margaret mentions, something for pain, something for constipation. It is very important to have all these things on hand so you can really jump on the symptoms before they get out of hand.


--hydration can help. I used to ask the nurse to hang an extra bottle on my mom during chemo and then if she became dehydrated between chemos I would bring her in and they'd hand a liter. (she had other health problems and tended to get diarrhea which was painless, but the dehydration would be a medical problem and make her daffy).

--steroids can help. Some docs give them orally the evening before, others in the IV bag, others both.

--anti-anxiety medication can also help some people. My mom would take a pill the night before her chemo and for 2-3 nights after. Ovca is scary stuff and anxiety would keep her up - she'd forget about it between treatments, but chemo made her anxious.

Sirensong, you WILL get through this - Here's a big group hug



Dorrie
  #7  
Unread 04-09-2003, 01:15 PM
Not Tolerating Chemo Well

I am sorry you had such a terrible time with the first chemo, but you have gotten good advice here. There are so many things available to help you thru and maybe this first one was the worst.
For me the 4th was the worst and nothing helped, except prayer and determination to fight. This will be over soon and I am prayin for you. Hang in there Siren Song.
  #8  
Unread 04-09-2003, 02:36 PM
Not Tolerating Chemo Well

I am so sorry to hear of the difficult time you are having with the chemotherapy. I cannot offer anything from my own experience, but just in case there might be something here you have not yet heard about, here are one or two suggestions from the Bristol Cancer Help Centre book I am reading.

"Remedies during chemotherapy.

For abdominal disturbances, take aloe vera juice (1 tbs 3 times a day); or slippery elm powder (1 tbs 3 times a day) in a concentrated herb tea or mixed with soya milk or yoghurt; or comfrey tea (3 times per day). Slippery elm can also be taken as a tablet 3 times a day.

For nausea.

Try root ginger, grated or as a tea (also available as tea bags). Some people also find sea-bands useful: these are bands worn on the wrist and are marketed for use against seasickness. They work by exerting pressure on relevant acupuncture points through little pads, and are remarkably effective. Most chemists stock them. Slippery elm is also often useful for nausea."

I wish I could do something more. I'm thinking of you and praying for you.
  #9  
Unread 04-09-2003, 02:59 PM
Not Tolerating Chemo Well

I understand the problems you feel with your 1st chemo. I too had terrible bone pain. I thought I had 2 fractured ankles. I took Ultram (prescription pain med) around the clock for 3 days. I vomitted several times despite Zofran every 8 hours. And I just felt very fatigued.

The bone pain was much less the second cycle and completely gone by the 3rd cycle. I also had less nausea the following cycles.

Follow the advice here and tell your doctor all your symptoms. There are many medicines on the market to manage these symptoms. If one doesn't work, ask and try another.

I wish I knew how to get hold of some MJ. Haven't had any since the early 70's. (It was very available then). If I had some, I would have used it. Use what will work for you.

Please remember that you can do this. And you don't have to do this alone. We are all pulling for you. Write whenever you need a cyber hug.

Ruth S
  #10  
Unread 04-09-2003, 03:20 PM
sirensong...

so sorry to hear your discomfort, but you got alot of good responses here. I have to agree wholeheartedly every chemo is different. I'm having a difficult time with my chemo #4, but all before were okay.

Hang in there.... it will get better, and just keep thinking, this won't last forever, even though it feels like it will, this is just a small amount of time to live through it, from the big picture.

's and 'ers to you!
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