remission question

[Brownie3321]

I know the nature of this disease is to reoccur. From what I've read, 80% of OVCA patients will reoccur in their life. Does this mean that there is a lucky 20% that are "cured" after their first bout with OVCA? I'm confused about the "cured" part. Please tell me that 20% of OVCA patients will be diagnosed, have chemo, and then never reoccur again. Also, with the 80% that do reoccur, does it have anything to do with the 1st initial staging? If someone is staged at 3 or 4, are there chances of reoccuring that much higher than someone who was staged at a 1 or 2? I guess I'm just looking for some real stats from all of you. Since OVCA is all very new to me, I wanted to see if there is any of you that have not reoccured, and for those that have, how many times and what was the remission period for you? I hope this is not too personal of a question, I'm just curious. Thank you. With love, Deandra

[SimplyStar]

I think she should be followed very closely with the CA125 and scans, the recurrance rate is very high, there could have been microscopic cells that were either dormant or in places where he did not do a biopsy.  Perhaps your Mother will be one of the lucky ones, at least we all hope so, as this disease is terrible.  My daughters surgeon told her that he was sure "he got it all" , but she recurred even after  chemo. He told her all it takes is 1 cell left, it divides, then there are 2 , then they divide  and so forth.  Good Luck to you both.  Keep us posted please, we care.

[pocashontas96]

My mother had Ovarian Cyst that were full of cancer (october of 2007). They did remove them. One side was the size of a large melon and the other was the size of a softball. The doctor said the biopsy of the surrounding areas were fine and were not effected. She did not require any Chemo or Radiation for treament of this. She is nervous in the fact that first it is taking so long to heal and the pain is still there and second is there a chance since she had a full hysterectomy of there being a relapse of  cancer. I know that we are blessed to have not had to go through the Chemo and Radiation but we were unsure of the reoccurance percent or chance. Good Luck to all of you and May God find the soul who will cure this disease! God Bless you All!

[crecco]

Actually the taxotere was the only maintenance chemo I was on as every other time it has been switched it was due to rising CA levels. Thankfully I have not experienced any hair loss with any of them other than the carbo/taxol, even though with a few of them it was slightly possible.The taxotere was so close to taxol that I didn't really experience any additional side effects from it. The Doxil was kind of bad on the fatigue side and I also developed hand and foot syndrome with it. But it really never made any major changes in my CA levels, they just fluctuated up and down and finally continued on a slow rise. That was when I was put on Gemzar, which dropped my counts to their lowest in a year. But as far as side effects, it was a rough one. It was harder on me than the carbo/taxol. I just plain kicked my butt for the first few months. It eased up but took its own sweet time in doing so. I had finally reached the point where it really wasn't bothering me all that bad and then my CA started going up again. It was also rough on my white counts, I had to miss a couple of treatments because they were so low. So on Mon. they put me on Topotecan. I was pretty worn out yesterday but didn't feel all that bad, and still don't. This is a major difference compared to the Gemzar the first few days. I am keeping my fingers crossed that it will work for awhile as I am getting tired of just getting adjusted to one then having to start all over again. I do understand that Topotecan Is hard on the blood counts too. I had 6 initial treatments of carbo/taxol, then 2 more for good measure. My first one was the end of Nov. 05 and the last one was the first of May 06. My hair had started slowly coming back in by the middle of April and the taxotere didn't affect it any. But I think that may be because it is closely related to taxol (a sister drug), and I do not think that it is available in pill form. I am sorry that I rambled on so but I hope that the info helped you out some. Wishing you all the best.  LOL  Chris

[Brownie3321]

Thank you for all your input.
rmarie - I was talking about maintenace chemo, sorry - I had abbreviated the word :) lol. Since I am currently on Carbo/Taxol through IV chest port and Cisp/Taxol IP port and doing so well with it, I'm sure Taxol will be used as maintenace. I really want to grow my hair back and was wondering if you're taking maintenace taxol, will your hair grow back? Did you have maintenace Taxol through your chest port, or can you take it pill form?
pf-pvd - no worries at all. you can post under any of my threads, I don't mind one bit :)
Chris - What were your symptoms with each maintenace drugs? Hair loss?

[crecco]

I also recieved maintenance chemo. I was to sick for immediate surgery so I had the 6 rounds of carbo/taxol, then an extra 2, for good measure I guess, then had debulking surgery. I was told that they removed eveything that was visible except what was in my liver and that was taken care of a month later. But it was explained to me that even though all visible signs of disease were gone that there were still microscopic cells floating around that would eventually settle somewhere and begin to grow again. So after recovering from surgery I was put on taxotere as maintenance. Which is basically a way to try and stay one step ahead of the cancer so that it doesn't get a chance to get to far before it is found. The taxotere worked for about 6 months before my CA started going up and 2 more spots were found in my liver. I was started then on Doxil the first of this year, then in Aug, was started on Gemzar, then yesterday was switched to Topotecan. My onc said that I would probably never really have a remission where I am cancer free with a normal CA, but as long as they stay that one step ahead, it can be kept at bay for years.

[rmarie]

You are correct, SimplyStar did address maintenance chemo, and I read it a main chemo.  Taxol is used as maintenance for a year following the carbo and taxol.  Then they go with others as it recurs.  I had doxil and carboplatin with my recurrance, following another surgery, however it was not maintenance, it was for 6 cycles every month.  the drugs used have varied according to what drugs women have had, or have worked in the past.  I didn't read it correctly.  With Doxil and carbo, I had nausea, however I was able to work everyday.  I did get anemic and it cleared after 5 doses of procrit.  

[PF_PVD]

I understood Brownie3321's question to be about maintenace chemo.  If it was I would be interested to hear more about it as well.  I do my #5 carbo/taxol tomorrow and #6 follows in three weeks.  My CA-125 numbers aren't yet where we want them to be so I'm wondering if we may be discussing maintenance chemo as well.  I was thinking I would be going back to work full-time stage IV or not and hadn't even considered I might be still possibly having some kind of continuing chemo.  Mind you I all for living longer if it helps.  So, please tell me more about maintenance chemo like drugs, cycles, side effects compared to something like first-line chemo, amount of down-time after due to side effects.  Right now I can only work part-time for one week every three weeks because of lots of nausea, fatigue, etc.  If this is hi-jacking this thread, please let me know Brownie, and I'll post it separately.

[rmarie]

Deandra
The main chemotherapy used in OVCA is carboplatin and taxol.  It is usually given through a port that they place in a large artery and put the port on the chest wall,, mine is just above the rt. breast.  The drugs they use are tough on veins and if they get into the tissue they can cause damage.  The taxol causes hair loss, it started about 2 weeks after receiving the first dose.  I had my head shaved.  These drugs were given every 3 weeks, and 3 days after receiving them, I felt like I had the flu, very tired, and not wanting to move.  I did however get up and do something for a couple of hours at a time and felt better for doing so.  Hope this helps, when do you start?  All my best.
Marie

[medresc]

The laypersons definition of "cured" is to be completely free of the disease.  Your oncologists and the medical establishments definition of "cured" is that you have 'no evidence' of disease post 5 years.  This means that, yes, you can still have ovarian cancer but no tumors are present and your CA marker is in the normal range...it is irrelivent if you have the cancer or not for their definition to be applied.

In-fact, cancer is a normal part of the human body...we have probablly all had it in one form or another several times, if not always, thoughout our lives.  THe major factor is how your immune system handled it in the past, present and future.

So, to be cured does not mean that the cancer will not come back...however it is an excellent prognosis if you are post 5 years 'cancer free'; primarily because you displayed excellent response to the chemotherapy you were on and can be assumed similar response will happen again if cancer resurfaces.

[Brownie3321]

Thanks Marty. What is main. chemo? Can some of you that have had this give me some insight. Do you lose your hair, side effects, how often, pill form?? Thanks, Deandra

[Brownie3321]

Thanks Marty. What is main. chemo? Can some of you that have had this give me some insight. Do you lose your hair, side effects, how often, pill form?? Thanks, Deandra

[SimplyStar]

Even when they do remove all during debulking , some immature cells lay dormant and can at any time start deviding. It is my understanding that chemo does not kill these dormant immature cells.  That is why to me at least, it makes sense to either get maintainance chemo or take all the natural things that labs have proved  help to raise the immune system and let your own body kill the invaders. Taking the chemo route to stay within level limits makes sense, maybe , just maybe, a miricle will happen and they will get that vaccine we are all waiting for.  it will happen, I had polio in 1952 and 2 years later they found the vaccine, that wiped it out. Smallpox was a terrible killer, wiped out.  Trust me, it will happen and I hope it will still be while I am around to cheer.

[Brownie3321]

Hi ladies - Thanks for your replies. I'm still so confused about this horrible disease.
Rmarie - When I had my debulking surgery, it was a total hysterectomy. The cancer had spread to my stomach lining and lymph nodes, but my onc/gyn told me he removed EVERYTHING to the mm. Why, if this is ovarian cancer, would it rear its ugly head again when you have removed all female organs? I guess I just don't understand when people say they had a 2nd or a 3rd debulking surgery. I guess this is to say that there are tumors resurfacing else where in the body? This disease is HORRIBLE!!!!

[rmarie]

I was diagnosed Sept 05, stage 3 C ultimately debulked.  Finished chemo in March 06, diagnosedf with recurrance in Feb. 07, second surgery with debulking, all evidence of tumor again removed.  6 rounds of chemo, finished in September.  Who knows when or if it will return.  This is a chronic disease, so I fiqure it will be back at some point.  My CA 125 has never been elevated.  Good luck with your fight against this damn disease.

[crecco]

I was dx at stage IV. It is my understanding that once you are dx at this late of stage, there is no actual "cure". It is treated like a chronic illness. The main goal is to keep it under control. As far as remission, I have only had 1 actual remission, right after my surgery which only lasted about 6 months. The lowest my numbers have gotten since that ime was 157, just a few months ago. But once again they are on the rise. That is a question I have written down to ask my onc today, If I will every really go into remission again. I have already been told that I would be on chemo the rest of my life. And if that is the case, I plan on being one of those success stories that makes it many years, even though the disease was very advanced when found. I try not to pay much attention to those % numbers as they can be to darn depressing. As Judie said, we are all different, therefore we will all react different. I have learned so much about this disease since dx, but there is still so much that I do not know. I guess that puts me right up there with all of the Drs huh? I wish you the best of luck as you continue your fight. Most of all, don't ever give up hope. LOL  Chris

[baguba]

Hi Deandra
I was Stage 1C; in remission for almost 5 years.  I recurred last May (3 small localized implants) successfully removed surgically, followed by 6 rds. carbo/taxol and a yrs. maint. When I was first dx. they told me I was in that 20% category, and as I was in remission so long, they thought I surely was in the "cured" group; but as you know, this disease plays no favorites and we all run the risk of recurrence.  This is not to say that we will recur, but simply that we could recur.  My onc. has told me that even though I did recur, in my particular case, she would be very surprised if it came back. I'd like to believe that, but pardon me if I am a bit cynical, as that is what they told me the first time. I don't think it matters at what stage we are dx as far as running the risk for recurrence.  I have met ladies who were dx at Stage 3, who never recurred, and on the other hand have met a couple of gals like me at Stage 1, who did recur. I also met two ladies who were dx. (both Stage 3), recurred, had another surgery, and both are still in remission - one 8 yrs. out, and another 12 years.  So there are success stories out there, and I personally hang onto all that "good stuff" to surround me with hope and promise. It's all in the cards, and we have to play the hand we're dealt.  Please remember this:  everyone is unique, statistics are simply numbers, and we are individuals.  Each of us will react differently, but we all work together towards the same goal.....a permanent and complete remission.  I wish that for you. 'Tis the season to BELIEVE!  Good Luck ~ Judie :)