Last vaccine trial injection
This has been my only reaction, except for some mild irritation at the injection site, although in the beginning, they did warn me that some of my fellow lab rats had experienced a "flu-like" reaction.
I asked some questions about the study. How many have been enrolled so far....8, and have any been dropped from the trial due to recurrence. Yes....2. That's discouraging. They are still recruiting, though. Statistically, 7 of the 8 should recur, had we not received the vaccine. Only time will tell.
Carlene
Comments
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Question about side affects
I am not on a trial but I also have been doing good with few side affects, just aches and chills 2 days after my chemo treatments, that's all. So i asked my hematology/oncology Dr about it and she said that some people react negatively and others do not, but it shouldn't be an indication of how well or well not a person is doing. So what have others heard and how are your side affects? Hizzy, I hope this trial works for you. The overall statistic are discouraging, but hopefully you can help change that. We need all the break thru we can get.0 -
Congratulations on your awesome reaction!
Dear Carlene
If I were in your position, I would want to know if the survivors who had the recurrence had any kind of immune reaction like you did. I doubt it.
I am certainly no expert on cancer vaccines. However, the way I understand the situation, the vaccine needs an immune system to be effective. So what you can take comfort in is that you HAVE a functioning immune system. AND the reaction that you had lets you know that your immune system is ready to kick cancer's butt should it try to rear its ugly head again!
I was getting a little concerned that you were having such an easy time of it up to this point. Now, I feel good about your future. We need you around here, Hissy.
Good for you and your sweeeet immune system!
Carolen0 -
WHOA GIRL!
Hey Carlene- No problemo - I had the same reaction after shot 3 - then my CA-125 dropped at the next reading from 23 to 20 ! Had to take the day off from work and lay around but I was fine by the next day - good as new - WHOA GIRL like CarolinK posted and the nurse at Dr. S's office said it's good we got a reaction - it proves the immune system is responding - will have my last shot on the 22nd - I say "BRING IT BABY" - we are gonna show this thing what Brooklyn and Texas can do!!! YIPPIE!!!0 -
I am glad it is overannecris said:WHOA GIRL!
Hey Carlene- No problemo - I had the same reaction after shot 3 - then my CA-125 dropped at the next reading from 23 to 20 ! Had to take the day off from work and lay around but I was fine by the next day - good as new - WHOA GIRL like CarolinK posted and the nurse at Dr. S's office said it's good we got a reaction - it proves the immune system is responding - will have my last shot on the 22nd - I say "BRING IT BABY" - we are gonna show this thing what Brooklyn and Texas can do!!! YIPPIE!!!
I pray this trial can lead to a cure someday. Sorry to hear you we not felling well, but the worst is over...val0 -
How Are You Feeling, Carlene?
Did the flu-like symptoms go away? Hope you're feeling better.0 -
Yes, I am feeling muchRookerbird said:How Are You Feeling, Carlene?
Did the flu-like symptoms go away? Hope you're feeling better.
Yes, I am feeling much better. Thank you, RB, for asking. I had one really, really bad day (Thursday) and then got slowly better. Last night I was back to walking, but only did a couple of miles, instead of my usual 3 1/2.
I hope the vaccine shows promise (it's only phase I), but I wouldn't bet the farm on it.
A bit off topic.....I mentioned Nancy to Dr S, and he was genuinely pained, I think. He told me that he talked to her husband "afterward", and what a nice guy he seemed to be, how sad it was, because of the children, etc. Nancy's disease, he said, was uncommonly aggressive. She had only one brief remission, and after that, it just got stronger and meaner. He has patients - more than one - who were diagnosed at Stage IV and never had a recurrence.
Obviously, ovarian cancer is a very serious illness, but it's not always fatal. We have to remember that, even though losing Nancy shook our hope for the future to its very core. Some of us might die from cancer. Might. Not will. Instead of 30%, I figure my odds are either zero or 100% - same as the odds of being hit by one of those New York City taxi cabs. Either I will die that way, or I won't. Worrying about it changes nothing. And gives me a headache, besides. So I'm going to bed now. I can worry tomorrow, if I'm so inclined, but not tonight.
Carlene0 -
Thanks, CarleneHissy_Fitz said:Yes, I am feeling much
Yes, I am feeling much better. Thank you, RB, for asking. I had one really, really bad day (Thursday) and then got slowly better. Last night I was back to walking, but only did a couple of miles, instead of my usual 3 1/2.
I hope the vaccine shows promise (it's only phase I), but I wouldn't bet the farm on it.
A bit off topic.....I mentioned Nancy to Dr S, and he was genuinely pained, I think. He told me that he talked to her husband "afterward", and what a nice guy he seemed to be, how sad it was, because of the children, etc. Nancy's disease, he said, was uncommonly aggressive. She had only one brief remission, and after that, it just got stronger and meaner. He has patients - more than one - who were diagnosed at Stage IV and never had a recurrence.
Obviously, ovarian cancer is a very serious illness, but it's not always fatal. We have to remember that, even though losing Nancy shook our hope for the future to its very core. Some of us might die from cancer. Might. Not will. Instead of 30%, I figure my odds are either zero or 100% - same as the odds of being hit by one of those New York City taxi cabs. Either I will die that way, or I won't. Worrying about it changes nothing. And gives me a headache, besides. So I'm going to bed now. I can worry tomorrow, if I'm so inclined, but not tonight.
Carlene
Your post was ABSOLUTELY the first time I've ever heard any good news about Stage 4, which I am. Thank you.0 -
jbeans888jbeans888 said:Question about side affects
I am not on a trial but I also have been doing good with few side affects, just aches and chills 2 days after my chemo treatments, that's all. So i asked my hematology/oncology Dr about it and she said that some people react negatively and others do not, but it shouldn't be an indication of how well or well not a person is doing. So what have others heard and how are your side affects? Hizzy, I hope this trial works for you. The overall statistic are discouraging, but hopefully you can help change that. We need all the break thru we can get.
There is a big difference between chemo and a vaccine. With chemo there is no correlation between severity of side effects and whether or not the chemo is working. You could be terribly sick from the chemo and it still might not work or you could have not so bad side effects of the chemo and it could be killing all the cancer. My last infusion of carbo/taxol was so easy I thought they had given me 'chemo-lite'. But much to the surprise of my Dr.,because she had to leave so much cancer behind after the surgery, my pet/ct scan was clean with just a couple of spots to watch.
So don't worry that you aren't having the worst time with the chemo.
Carlene I'm sorry you are feeling badly and I hope you recover quickly! I am going to ask my Dr about this trial I think they do it at Roswell Park where I am near. Do you think me having kidney cancer also will exclude me from the trial ?
I hope that when you are 80 Carlene they put your picture in the paper as one of the first women to survive ovca from the vaccine.
Colleen0 -
Glad you made it through the trial!!
Good to hear your feeling better and you're done with the trial.
About Nancy…… Yes, this disease is such a crap shoot. That's why I try not to invest too much time in the statistics. You just don't know what applies to you. Here is a link to an article in Cure Today and many here may have already seen this. Annette Mattern, a member of Ovarian Cancer National Alliance, has been battling this for 24 years!!!! http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1644
Keep on walking!
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Annette Matternjloe said:Glad you made it through the trial!!
Good to hear your feeling better and you're done with the trial.
About Nancy…… Yes, this disease is such a crap shoot. That's why I try not to invest too much time in the statistics. You just don't know what applies to you. Here is a link to an article in Cure Today and many here may have already seen this. Annette Mattern, a member of Ovarian Cancer National Alliance, has been battling this for 24 years!!!! http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1644
Keep on walking!
I read her book soon after my dx, and was very encouraged by it. I think she is the pres now of OCNA.
k0 -
Kathleen.....I have to gokayandok said:Congratulations!
You made it! And even survived those mad NY taxi drivers! I hope that this does it for you! And glad the side effects were short lived.
kathleen
Kathleen.....I have to go back July 5th, then every 3 months for 2 years, assuming there is no recurrence. If I recur, they kick me off the study.
My incisional hernia has gotten bigger, about the size of a large cantaloupe. It is now up to the point my "low rise" jeans have to button across it and it makes my clothes not fit right. Dr S had promised I could get it repaired after this last injection, but now he wants me to wait until after the scan in July. I must have gotten that famous "deer in the headlights" look when he said that, because he quickly added, "I think the scan will be fine - I really do - but if it did show something, heaven forbid, you would have to be opened up all over again, and you don't want to do that, do you?" I guess I don't (grumble, grumble)....but I really want to get this thing "fixed."
Carlene0 -
Hernia repairHissy_Fitz said:Kathleen.....I have to go
Kathleen.....I have to go back July 5th, then every 3 months for 2 years, assuming there is no recurrence. If I recur, they kick me off the study.
My incisional hernia has gotten bigger, about the size of a large cantaloupe. It is now up to the point my "low rise" jeans have to button across it and it makes my clothes not fit right. Dr S had promised I could get it repaired after this last injection, but now he wants me to wait until after the scan in July. I must have gotten that famous "deer in the headlights" look when he said that, because he quickly added, "I think the scan will be fine - I really do - but if it did show something, heaven forbid, you would have to be opened up all over again, and you don't want to do that, do you?" I guess I don't (grumble, grumble)....but I really want to get this thing "fixed."
Carlene
I certainly don't blame you, that sounds dangerously big!
k0 -
Actually, the bigger theykayandok said:Hernia repair
I certainly don't blame you, that sounds dangerously big!
k
Actually, the bigger they are, the less likely to strangulate. So that's the "good" news. And it's not painful, unless I forget and pick up something heavy, or I sneeze/cough/strain, then it hurts. It's really strange....the pain is a sharp burning sensation, not a stabbing pain, as you might imagine.
Dr S said, "I know you will be glad when you've seen the last of us. I know I would be." He is very unassuming. No ego at all. I find that so refreshing in a physician. Even my local gyn/oncologist, who I believe does truly like women, can get very crabby and a bit high-handed. I am tempted to ask Dr S if he would treat me, should I recur. My husband will not be happy (he hates flying back and forth), but I figure I'm entitled to get my way in all things cancer related.
Carlene0 -
Thanks for the link to the articlejloe said:Glad you made it through the trial!!
Good to hear your feeling better and you're done with the trial.
About Nancy…… Yes, this disease is such a crap shoot. That's why I try not to invest too much time in the statistics. You just don't know what applies to you. Here is a link to an article in Cure Today and many here may have already seen this. Annette Mattern, a member of Ovarian Cancer National Alliance, has been battling this for 24 years!!!! http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1644
Keep on walking!
Great article. Thanks for posting the link.
Teresa0
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