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272338 tn?1252280404

I just need to vent

Well here it is 3am and I am still wide awake. When I had my first recurrence I learned that when you have a recurrence it is not unusual to experience some of your original symptoms, just not as bad. I start my 3rd round of Topotecan on Monday and in my opinion, it is not working. I will also be getting another CA drawn. The last one showed a rise from 358 to 478 and truthfully I expect it to have risen again. The last couple of weeks things just have not been right. Over all I fell pretty good, but I can just tell that things are not the way that they should be. I have noticed an increase in frequency of urination, I have been having a lot of indigestion, occasional constipation and occasional diahrea, insomnia and just a feeling of blah. All of which led to my original dx but they were much worse. I firmly believe that Topotecan just isn't right for me and once we move on that things will begin to calm down once again. But it is so damn frustrating!! I would love to be able to find one that will bring my numbers down and let me dance with NED, even for just one dance! But I will be happy to just have things level out for awhile. Sorry to ramble on so, I just needed to get this off of my chest. I do plan on telling Doc on Monday that I don't think it is working. I guess another reason is that I get so tired of having to change chemo. It seems that just about the time my body adjusts to one and the side effects start to ease, that it quits working and I have start all over again. Plus the fact that since i already know what we will be switching to (Avistan and either Taxotere or Abraxane) I know that I will be losing my hair again. I know how vain that sounds and I also knew a long time ago that it would undoubtedly happen again, I just didn't want to think about it.
  I am so sorry if I sound like I am being selfish because I know that so many of you out there are going through the hair loss right now. It is just hard to deal with. Plus knowing that this thing just will not give in. As much as I try not to, I guess I am just having one of those nights. I am sure that not being able to sleep doesn't help matters any. Oh well, tomorrow is a new and different day.Thanks for letting me vent. Love to all of you, Chris
15 Responses
Avatar universal
Chris, I am so sorry you are in this place right now.  I hate ovarian cancer!  It feels like a ticking time bomb.  I don't think anything in your post sounded selfish or vain.  You always have been an encourager and now you need to be encouraged.  I am also suffering the insomnia thing as it is 2am here in CA.  I also was like this before my initial dx. and figured the skewed hormones must have caused it.  Do you think the insomnia is part of the ovarian cancer in general?  It seems like many on this board are having a really hard time this week.  I hope you feel better soon and I believe you will get your dance.  Keep the faith!  Shelly
Avatar universal
I'm sorry to hear about your difficulties.  I went through a course of Topotecan and continued to require paracentesis which essentially told us that it wasn't working.  I've heard more people not having success with this drug than those who respond favorably.  I was switched to Carbo and Gemzar for awhile until I reacted to the Gemzar.  Now we're going to try just Carbo and see what happens.

As far as the insomnia goes, I've struggled with it since my diagnosis 2 1/2 years ago.  I've been taking a prescribed sleep medication but I still wake up frequently, often not being able to go back to sleep.  That's the last thing we need; adequate rest is so important.

Hoping things improve for you soon!  We are all in this together.

Christa
Avatar universal
There was nothing selfish about your post.  I guess that's one of the functions of this forum, isn't it?...to vent?  I am praying for you.   I HIGHLY respect the dignity and grace that you and all the other ladies show in the midst of what you're going through.  This is no eception.  It's a tough fight, but you're doing great!  You (and all the ladies on this forum) are truly an inspiration.  God bless!  Teresa
Avatar universal
Hey girlfriend.. I am feeling your pain..I want you to know I understand. as do you iunderstand me when I tell you all my regular testing is coming up soon.  Some damn days are just ugly and you are having one... You will get through this and we will help... I am sending you hugs and love from Beautiful sunny Costa Rica... Ronni
355321 tn?1199706591
Hey there ... I hope that when you read this that you are finding some relief to everything that you are feeling right now ... I wish I could be the "Fairy Godmother" of the OVCA around the world. I would wave my wand and ... POOF! It would all be gone :)
You could be "Chris-derella" and have your dance with "Ned- your Prince Charming". Pumpkins are out of season so you may not get that chariot ride ... We do have an abundance of rats here on Okinawa so I am SURE that I could pull off some sort of  *get-up* to pull you to your ball at the PALACE ... (are you able to picture it in your mind now? Just close your eyes) .... theres incredible tasting food (and yes, ALL of your taste buds are working properly now-they are thanking you for sharing this meal with them:) .... you can picture OVCA as the wicked step sisters itoo if you would like --- Oh, and by the way, THEY ARENT INVITED!!!!  Oh, you would have such an amazing night **** this ball is for you, ALL of you **** You are all there in beautiful gowns, you ALL are rockin' the most GORGEOUS up dos - no hair pieces/ wigs involved, AND the best part is ~~~ When the clock strikes 12, you ALL remain just as beautiful as you were at 11:59 :) This is true because your beauties run FAR below the skin's surface, you have hearts of fighters and survivors .... Nothing can ever out shine that ....

Chris, I hope that my mini-version of Chris-derella helped you smile .... I wish I could do more, but I will pray for you again when I lay down in a few minutes for the night ....

**squeezy**
Blessings
Mitzi
Avatar universal
Hi Chris, I'm hugging you right now.  May the Lord bring you immediate peace, if only for the fact of knowing He is with you.  

Take care,
L
158061 tn?1202678326
You beat me to the vent, ever since they found more disease in my chest, I have wanted to scream.  NED didn't even last a month of the drugs, so I guess it's not all that it is cracked up to be.  I found insomnia came with menopause, always was a terrible sleeper but then it got worse and this ovarian cancer has not helped sleeping a bit.  I don' t know what drug they will pick for me yet, but I really don't want bald in the winter, it was cold enough in the spring.  I find it all terribly frustrating, you don't want the chemicals because they make us feel bad, but to not have them, makes us worse.  Maybe you'll get a surprise and your CA 125 will be down, I hope so.  

I send you lots of hugs and positive energy, and understanding of your down mood.
Marie

107366 tn?1305680375
COMMUNITY LEADER
Oh goodness, please know you are not saying anything that is selfish.  I lost my hair for the second time after one treatment of Taxol/Carbo when my recurrence was found last May.  I started Gemzar in August, and it made me so sick, but I stuck with it because it seemed to be working AND because my hair started growing back.  My Onc. added Taxotere in November, and the first thing that came to mind was, "Damn it!  There goes my hair AGAIN!"  There are so many things this disease takes from you...why does hair have to be one of them?  Turns out, I had a bad skin reaction to the Taxotere, so as of yesterday, I am off it...before it had a chance to take what little hair is left.  I feel like maybe my priorities aren't right, but I have to say, I was smiling on the inside when my Onc. said no more.  

You never have to appologize for coming here with anything that is on your mind.  I think several of us might have already lost our minds if we didn't have some place to go to vent to others who know what it's like.  Hang in there.  I know those words seem too simple for how you are feeling, but you're going to get through this.  You make a difference in the lives of people here, and we are so blessed because of it.  

Gail
187799 tn?1219609573
I'm so sorry for how you are feeling.  I cannot relate to the ovca itself, but I can to the sleeplessness, moods, etc.  Vent any time you want as that is part of why we are all here - venting support!!

I am sending thoughts and prayers your way and hope it's sunny for you today - literally sunny outside as I think that helps a bit with our moods.  It was really warm here the past few days and I wore sandals and the weather can help a bit to make your life a little sunnier!  It lifted me up a bit and I pray that the sunshine will lift you up as well.

Vent back all you want; I'll/we'll all listen and support!  God Bless...... Elizabeth
146692 tn?1314331773
Hi Chris, ss you are having a hard go of it. Please do not feel bad, vain or anything else. I really believe this side of the forum is as important as well, yes it is great to be positive, and supporting..but it is nice to be able to vent, rant and get it out. It makes all of our symptoms, and disease more real. Docs always throw the positives or the grim news, but who knows what we are going thru daily?? our friends online, because that is where we go to get it off our chests, and find strength in the words of comfort only others going thru it can give.
oh Mitzi, how wonderful your fairytale is, you made me laugh and cry at the same time girl
take care all
272338 tn?1252280404
  Thank you all so much!!! I am not usually whiny like that, but I guess we all deserve to be whiny once in awhile.
  I finally got a few hours sleep this morning so I do feel a little better now, but you all helped in a big way. Your care and support mean so much. I was in tears by the time I was done.
  Yes I do feel that insomnia goes along with ov ca. I never had a problem sleeping before ov ca came into my life. But it was a major symptom when it first hit and has been since.
  Mitzi yes I had to laugh, Chris-derella!!!  ( and bald even!)
  I don't know what I would do without any of you! Thanks for lifting my spirits. Sending big hugs to all of you and lots of love. Chris
Avatar universal
My Mom has been on chemo for over a year now and has also never had her dance with NED.  I am still praying that her dance will come!  We are hanging in there and I am still a firm believer that she will get better, for however long God wills it!  

I am amazed by all of you ladies on this forum!  You are such an inspiration and your strength is a wonder to behold!  ROCK ON!

KarateMom
272338 tn?1252280404
I decided to just bring this back up since venting is really what I am doing again. I just got the results back from my CA that was drawn on Monday and it was as I suspected. They were up from 478 to 613. I know that is what I was expecting but that doesn't make it any easier. I guess that down inside i was hoping that I would be wrong. I HATE this ****!!! And I have to say that I completely understand how someone without the will could just say the hell with it. But since that is not an option for me, the fight goes on.
  Right now my emotions are a jumbled mess. If I did not have all of you I think that I would be a train wreck! So thank you for letting me get it off of my chest once again. I feel so much better just knowing that there are so many of you who understand.
  I do apologize for my language, but if I wrote what i am really feeling, the admin would probably pull my post.
  Oh by the way, my onc did give me something to help me sleep and also something to try for the hot flashes. I voiced my concerns to him on Monday and he said that if I had another big jump that we would go on to the Avastin as there is no sense staying on the Topotecan.
Once again, thank you all for listening.  Love Chris
Avatar universal
Oh Chris, I am so sorry!!!  The fact that you are angry and frustrated shows you are going to fight this head on.  I haven't had to face chemo since I am early staged but this ovca looms over my head and I can relate to your emotions.  There are great stories of hope and remission out there- even after multiple recurrences.  One of these clinical  trials may soon provide new hope and treatment.  Hang on and treat yourself well.  Do some things that make you happy today and take it one day at a time.  I am thinking of you and praying for you.  Hugs.      Shelly
Avatar universal
One more thought...when I had my surgery I was roommates with a woman with stage 4 cancer.  They had to keep draining her lung...she really was in bad state.  Since I was there ten days we had time to chat in the wee hours of the night.  She was originally told she had 6 months to a year and this was 7 years later and she still wasn't taking no for an answer even when they kept coming in and talking like it was over.  I, of course, heard everything they were telling her and I was more shaken than she was.  I was amazed at how calm and positive she remained and how authoritatively she talked back to her team of docs.  I asked her her secret and she said first she prays and trusts God and second she said "I guess I sort of am in denial and I never think of the what ifs."  She chose to just focus on her current treatment only.  When she was rapidly losing weight because the cancer was ravaging her liver and lungs...she was thinking of keeping her strength and insisting they bring her ensure so she wouldn't lose too much weight and have a harder time gaining her strength back.   She is amazing and is still alive today...six months later....seven years longer than their best estimate.  I think some ostrich behavior of putting our head in the sand and only thinking of the day's needs is helpful.  :)
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