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Steroids

dardar38
  • By dardar38
  • Posted June 19, 2008 at 10:17 am · 12 replies
  • Shared with the public
0 Recommendations

I am sick of the side effects of the dexamethasone that they give me orally before my gemzar treatment. I have gained 10 pounds since I started Gemzar on 5/9 - lots of water retension. (I had been on carbo/taxol for 6 months previously and received dexamethasone IV - not so much weight gain or water retention but some insomnia). I can't sleep at all on the night that I have the treatment and am very hyper the day after and then I really crash - extreme fatigue. I also am given neulasta on the day after treatment to keep my white cell count up - not ure that i need it as my white count is very high. I am going to ask the doctor to either discontinue the dex... or reduce it and to discontinue the neulasta until we see if I really need it. Has anyone else experienced these problems? I have stage 3 ovarian cancer - inoperable at this time - diagnosed in October, 2007. The carbo/taxol brought the CA125 down but did not shrink the tumors. I won't know what the gemzar is doing until they do a CAT/PET after the 9th treatment end of July. I changed Drs and Medical Centers after the carbo/taxol because the Dr I was going to didn't seem to offer much hope.

Explore topics in this journal entry and replies:

Cancer Taxol Surgery Dexamethasone Avastin Zantac Paxil Ovarian cancer Insomnia Depression Stress

12 replies

KellyRilla

HI there. I'm with you about being so tired of the side effects of the dexies. I get it in my IV before chemo and also take it orally for 4 days afterward. I have stage 3-c and was diagnosed in June, 2006. (Coming up on my 2yr anniversary and having a party!)
I had debulking surgery first. Lots was left behind, in lymph nodes and on my liver but chemo took care of it. Then in Sept 07 I had a recurrence and have been on carbo since then. I really think that I'm more annoyed by all the dexies than the carbo and neulasta shots. They make you wired, hungry and then real cranky. I hate it. Plus I've gained 20lbs! Right now my ca-125 is 79 and I'm thinking of taking a break for awhile.
Are you still not happy with your care? Have you looked into Cancer Treatment Centers of America? I go to IU Med center in Indianapolis and LOVE it! They have always been very encouraging even though it looked really bad for me and I was very sick for a long time.
God bless, Kelly

dardar38

Thanks - I have looked at the Cancer centers of America website and may really consider it later. I am happy with the care at Univ of Michigan just not happy with what the frequent chemo and steroids are doing to my body. I am still fatigued today - this is the worst it has been. Went through carbo/taxol with very little side effects. Neither of my doctors wanted to operate and yet you said they debulked you as much as they could and then chemo took care of what was left. I don't know why they re treating me differently. I am glad that you had some time when you were free of chemo and hope this one gets the recurrence.

KellyRilla

Who knows what goes on in the minds of doctors. Ha! I have a job where I am suppossed to read their minds and anticipate what they are going to need next before they ask for it. I'm a surgical technologist or "scrub nurse" and assist them during operations. Believe me it's not all that easy sometimes. Surgeons can be difficult to say the least! But there are some I love too!

I sure couldn't guess at why they want to wait to do your surgery. I have read on here where lots of women received chemo first to shrink the tumors as much as possible then had their debulking surgery. Also, many women said they had a 2nd surgery after a recurrence. My doc told me that I probably wouldn't have to do that. Like, she preferred not to do that and treat recurrences with chemo only.

The truth of the matter is that they are making all this up as they go along. In other words, we are truly the guinea pigs and they are still trying to figure out what works best. There just isn't enough research data out there on ovarian cancer. Yes, they are making some progress but ov cancer doesn't get enough funding like other cancers do. Nor does it receive the attention or awarness publicity.

I hope you are feeling stronger every day. Don't try to push yourself too much or expect to feel a certain way based on past experience with carbo-taxol. Take each day as it comes along and try to find something good in everyday. Even if you just lay around and watch TV all day. Don't worry about the weight gain either. I say that as I gripe about not fitting into any of my clothes. (I think I'll go make some french toast and slather it with lots of maple syrup) And I wonder why I'm so fat!

Take care and keep your chin up. And good luck getting off the steroids. I would LOVE to do that.
God bless you. Kelly

dardar38

Cute - I love the maple syrup on toast thing - gotta try it - maple syrup is really good on vanilla ice cream with ground walnuts on top. I love ice cream and have allowed myself to eat whatever I want so some of the fat is true weight gain - however I "lost" 5 pounds overnight and my legs and feet look better. Felt great yesterday and ok today. Crazy disease. e-mail me at daniede62@yahoo.com Hope all is going well for you.

San

I have been on gemzar and avastin for nearly a year (has not been effective for me at all) and I did not take any steriods - did not have any side effects either. I did take steriods with my first and second treatments - taxol/carbo, taxotere/carbo and gain 20 pounds, just now getting back to my normal size. Your doc know best, but if I didn't need steriods (took neulasta shot)maybe you don't either. We certainly don't need anymore "foreign" things in our bodies than necessary!
San

dardar38

Thanks - I have talked to the Fellow working with my Dr. and she said that the steroids help fight the nausea and help the immune system but I said - lets try reducing the dosage form 3 pills to 2 and if that works keep reducing until we get to none. She said only the Dr. can make that decision so we will see. I also asked to try not taking the neulasta shot at the beginning of the next cycle so we will see. I agree about the "foreign" things in our bodies - I feel like a walking pharmacy.

tjjakovac

I too have a terrible time with steroids . I am so wired that I lose about 2 full days sleep. My dr. did cut the dose and it helped let me sleep a bit more. Ask your doctor about giving you less steroids. I bet he will agree. Good Luck. I just had 5 treatments of Doxil and that was about as worthless as doing nothing. Will be starting a different chemo soon. Had 6 year remission and then got ovca back again in 2005 and 2007. Carbo/taxol in 1999 and 2005, Doxil 2007 (terrible stuff) burned feet burned knees and climbing ca125.. Therese

lindsayrussell

I am waiting for a surgery date to remove a temporal lobe tumor and have been on dex for about a month. I feel completely OCD and if I wasn't taking amitrypt for the chronic headaches I would never sleep. I am obsessed with clean eating and watching calories and am freaking out about weight gain...it is unavoidable. My face has doubled in size and my mood swings suck for me and others around me. I have never smoked cigarettes but am now, also I want to get drunk all the time. This is probably the stress of brain surgery (while I'm awake) and the dex but it has been really hard. Can anyone relate?

JanP

I just posted a reply on Something about Appetite and will put the same advise here.

The chemo effect is enhanced by the use of steroids so they are worth taking. As with all drugs each individual responds differently.

I was prescribed a fairly standard regime after my first Doxil ;18 tablets of Dexamethasone :- 3 daily doses of 2 tabs at a time.

That made me eat all the time and get hardly any sleep

Next round I negotiated a different regime. I take 2 x 2 tabs per day for an extra day having the second about 3 pm in the hope of some sleep. It has solved the problem of over eating but I still get little sleep.

I feel that is OK as the weather is so hot in UK at the moment and you cannot go out into sun when taking Doxil so I am happy to be out at dawn doing the garden for an hour or so.


Incidentally Doxil/ Caelyx, as we call it in UK, is suiting me very well. Minor side effects and has brought down the CA125 from 887 to 478 since Feb so delighted. Scan in 10 days to find out whether it is also diminishing the size of my 3 lymph nodes

Also further surgery on tumours depends on whether they are accessible. Many in the lymph nodes are dangerously close to major blood vessels. Do you prefer to bleed to death?

Trust your physicians but keep alert for new treatments.
JanP

twp

Hi -

I had the very worst time with steriods and I now have on my medical history that I can't take them.

10 years ago I started down this road and was doing 9 rounds of carbo/taxol. I had never been in the hospital before having cancer, so did not know what to expect. I had a 3 year old and a 8 year old at the time. I could not sleep, period! No-body told me about the effects steriods could have on me........so I thought this was due to the chemo. After 5 months of not being able to sleep I called my doctors office.....I was crying because I could not sleep and was doing chemo and trying to take care of my kids. My chemo nurse decided I was depressed and I was so vulnerable that I let her talk me into being depressed. So they added Paxil onto everything else I was taking without me having to see anyone. This started me down a terrible path. The drugs put me into a chemically induced depression. I could not sleep, I could not spell, I could not fill out forms, I was crying all the time, I lost interest in everything I loved including my family and I had VERY Black moods......all the while I was getting better. I finally stopped listening to my doctors and took my self off all the drugs there were giving me and by then I was done with my 9 rounds of Carbo/Taxol. Wthin 8 weeks was back to myself, happy, positive, interested in my life.

Just about 2 years ago as I was doing some tests to get ready for surgery I spoke about this because the doctor asked why I could not take steriods. She told me that I had "Steriod Psychosis" when I was taking them. I know that drugs effect everyone different, but doctors need to keep track of their patients and what side effects they are experiencing, because you could be that one in 1000 to have really bad side effects.

songbird78

Wow you all are taking a LOT of steroids. I can tell you the only steriods with the Dexi I got was durning treatment,in the the IV drip ,the premeds along with Benydryl and some Zantac, thats it . I never did a regimine with steriods both this time nor last time, my doctors answer was if I dont need it and never had a reaction why bother? I agree.
I also think Neurlasta is a godsend , im a goer , im very active and I think by taking it it deff has worked for me , my white count is super high, and to combat any effects from it I do start a extra strength tynol regimine for 5 days , no side effects...
I would ask all your doctors to take you off the steroids period, unless your combating a reaction ,if your not only the one in treatment is really needed.

dollycat6

I tried to get in to cancer treatment of america and I have blue cross, medicare as well as tricare and they flat out refused me and wouldn't even offer a payment plan so I was dumbfounded and ended up in Northwestern University in Chicago.

dollycat6

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