Same song, second verse. First recurrence.

The second CA125 test in a month confirmed what I already knew in my heart. With a CA125 of 323 (it was 154 a month ago) and enlarged para-aortic lymph nodes, my gyn/onc said yesterday that we have to assume the cancer is back.

I was optimally debulked in Nov of 07 and staged 3C. I sailed through IV and IP Taxol/Cisplatin and had a good 3 month check up. Then my CA 125 started rising.

For some reason, I had it in my head that I would be one of the ones who did not have a recurrence. And if I did, I figured it would be years down the road. Why I thought I was special, I do not know. I guess we all engage in that magical thinking so that we can go on with our lives and pretend that cancer isn't hanging over our heads.

My doc is putting me on once a month Doxil, probably starting next week. I have to have a MUGA scan of my heart first. That's a new one. Anyone know about that?

I have a call in to my chemo nurse (I really, really liked her, but was hoping to not see her again, you know?)
I have read the threads here on Doxil, and I have to hope that my response will not be too bad. I did really well with much more toxic drugs, so I am hopeful. (Again, unrealistic, I am sure. I know each drug is different to each person. Just more magical thinking so I can plow ahead with minimal fear of the chemo.)

I have recently joined Life Extension and am reading about natural supplements to take ...or not..during chemo. Some boost the effects of the chemo. I had started a bunch of supplements a couple of weeks ago, but I stopped them knowing I might be in chemo again soon. Lots of reading to do.

I have cried so much the last month, trying to come to terms with this disease and the likelihood of recurrence and all of its implications. I am trying to get past that now and prepare to fight again. It is hard.

My thoughts are with each and every one of you who is fighting with me. I wish for us all courage and strength to get through this.

By annejulia
Posted December 4, 2008 at 3:28 pm
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First of all I would like to wish you the best Jennali. We are in the same boat and we don't want it to sink. I have been on Doxil and I had to have an echocardiogram before they started it. Doxil has been known to damage the heart muscle so they need to make sure your heart is functioning properly and they will calculate a safe dosage regimen for you.

I have stage 3c Ovarian Ca. I was diagnosed in July of 2006. I never went into remission . Have had four major abdominal surgeries , the last being in February of this year.

I have been on Taxol / Carboplatin first line of defense. Topotecan, Doxil, Carboplatin and Gemzar, and now Gemzar only. Being on Gemzar only my CA 125 went up to over 75 from 15. Carboplatin/Gemzar brought it down and now its up.

I hate the worries that go along in figuring out what the heck is going on.
I am scheduled for a catscan in January but I wish it were sooner since my CA 125 is going up. This disease has brought me to tears on many occasion. I try so hard to be brave.

I will pray all goes well for you and that this chemo will be kind to your body and you will have a positive outcome. Hang in there!! Annejulia

By jolock2004
Posted December 4, 2008 at 3:57 pm
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Ladies,
My heart goes out to all who have this disease and especially those of us who are having a recurrence. I'm now having my 3rd recurrence and it is scary as hell,the chemo is very rough on me and usually I sail through without hardly a side effect. So that really has my spirits down. I know for my 1st recurrence I felt like you did..I really wasn't expecting to have to go back on chemo so soon..and cried alot while waiting for the results. I think it's normal to be scared we know a whole lot more about this disease then we did the first time around. I have been on Doxil and as long as you follow the instructions you should be fine. I used ice chips alot while it infused as well as the following week. I think it helped me from getting any mouth sores. I did get s itchy rash,but that was the worse of it. It gave me my longest remission ever 13 months. I will keep you in prayer~~~Joanne

By Jennali
Posted December 4, 2008 at 4:06 pm
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Thank you so much for your good wishes, Annejulia.

One thing that makes this board so special is that, like you say, we are all in the same boat. We are all fighting for our lives and yet we still care about one another. We are strangers "in real life", but share so much here. I don't know any of you, but I know our fears. I know the thoughts that keep us awake at night. I know the energy required in putting on that game face when we are scared witless. I know the uncertainty and the worry. I also know how we learn to cherish each day, each moment and still yearn for more.

I would not choose this journey, but I am glad I have companions along the way.

Annejulia, January must seem years away. I wish you could know something sooner. The waiting can be so stressful.

All best wishes to you.

By Jennali
Posted December 4, 2008 at 4:13 pm
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Joanne, we cross posted.

I'm so sorry you are going through this, and for the 3rd time, too.

Annejulia, I can hardly imagine so many surgeries . Your poor body must feel so beat up.

I thank you for the Doxil tips. My doc said I could be on it long term if needed and if I do well on it. I don't exactly relish the thought of long term chemo, but it beats dying from this bastard of a disease.

What chemo are you on now?

I appreciate your prayers, Joanne.

By jeaniet
Posted December 4, 2008 at 8:55 pm
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Jennali......I was crying as I read your post. We have much in common. We are almost the same age. I too have been living in the magical world of denial. I too am Stage 3C--diagnosed almost a year ago. Had those shitty periaortic lymph nodes too. Sailed through chemo and had clean PETs even as early as mid-chemo. But I know recurrence will come and I know it will be as devastating for me as it is for you. Please hang in there, you are a warrior. I will be thinking of you.
Jeanie

By Jennali
Posted December 4, 2008 at 9:35 pm
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Thank you so much, Jeanie.

We are all warriors. It's just that we got drafted into this war...we had no say in it.

I hope your time of NED is long and happy.

Jenn

By JanP
Posted December 5, 2008 at 6:19 am
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Good morning everyone
Here I am in GB in the same life-boat and so glad to have found some fellow survivors.
Following jennali's ideas I guess we have already survived the shipwreck for which we are grateful, but now in this little boat things are more precarious and the waves more likely to overwhelm us, so we can hold each other for comfort.
I was so lucky to have over 4 years remission and then a year while theCA went up to about 700 but still feeling fine. Just scared at each scan and wanting to begin the next chemo but also dreading the side-effects.
The protocol here in England seems to be to wait until the new tumours are showing well on the CT scans and even then they are not in a hurry to start chemo. Is that the same in the States? I found the second helping of 5 carbo/taxol nowhere near as bad as the first .About 6 days of each treatment pretty awful and the next 2 weeks bearable, althugh I felt very tired.
My CA is now 37 and one of the three tumours in the periaortic lymph nodes was below 1cm at the last scan. The others are now invisible.
I am now taking Femara with no problems. Have a blood test and a bone density scan next Wednesday and then see my onc in January.

Did you notice that we all begin with J ? I'm including anneJulie, of course.

Lets all keep bailing out the water and try to keep afloat. It's great to meet you guys!!
Best wishes
JanP

By FavoriteAunt
Posted December 5, 2008 at 7:08 am
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There is a chorus of us singing that same song with you, so you are not alone. And you didn't think you were "special" - you were just being hopeful, like we all try to be. I'm IIIC and had a 6 year remission and figured I had it beat. Surprise - had a recurrence last year, and another one now after just 10 months. As my doctor reminds me, we are treating a "chronic" disease. Once you can accept that, try to go with the flow - but always remain optimistic. I'm on Doxil now - had my first treatment 3 weeks ago and go back next week for #2. It's about an hour every 4 weeks and I'll need at least 6, maybe 8 rounds. He said if it doesn't work, we'll switch to something else.

I asked the ladies here about Doxil and got very helpful and personal info, so when I went to the doctor I was well prepared. I've read it could affect your heart, but my doctor apparently didn't think it was an issue for me. So far it's has been fine. I still have my hair and do not think I will lose it. I'm being extra careful because of the possible hand/foot syndrome and use the Udderly sMOOth cream every day. I know this side effect can still pop up, but my nurse said to be proactive and I am. After 2 weeks I noticed I've been much more tired and have had some nausea (but nothing like the kind I had from Taxol or Taxotere). I've had some very minor mouth sores - more like discomfort - and have to watch eating spicy foods. The most important thing is that I noticed that the pain I had on one side (from the tumors) is almost gone. I'm thinking that this chemo, which slowly seeps into your body vs. full blast like Taxol, is finally starting to work. I'll discuss my hopeful feelings with my onc. next week.

I admit this last recurrence upset me more than before. Last year's brough no pain or symptoms, so I figured I just get through it again. This one brough pain (enough to need Percoset) and it was a reminder that there are things inside that could kill me and I don't want that to happen. It's a lousy disease, but we have to stay strong and positive. Just remember, you aren't alone and we will all get through these battles together.

I wish you the very best and hope you'll keep us updated.

By FavoriteAunt
Posted December 5, 2008 at 7:15 am
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I can't believe the "J" coincidence - my name is Jo!!

Jan P. - to answer your question - in the States we don't wait as long. If there is a rise in CA125 and anything shows up on a CT or a PET, it's right back to chemo. In general, they treat pretty aggressively here.

Hope all you wonderful "J" ladies have a relaxing and less stressful day!

Best to all,
Jo

By gogi
Posted December 5, 2008 at 9:55 am
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No "J" here, but I am so moved by all of your posts. We need each other to lean on. We are separated by distance, but close together here...... Gogi

By Jennali
Posted December 5, 2008 at 7:40 pm
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Well, the process has started again. I went for blood work early this morning, a CBC and a CMP in advance of chemo. I had the MUGA test this afternoon to make sure my heart is strong enough to be poisoned...or something like that. I spoke with my sweet chemo nurse and she told me basically the same things I have learned on here about Doxil. Just waiting on the appointment now.

I wish there were a way to even out this roller coaster of emotions. I am on an antidepressant already. In fact, I just had an additional new one added to my old one. I know that I can't medicate the fear and anger away. I am still a mess emotionally. My husband has been my steadfast companion through all this, but he has a hard time understanding why I am so wacked out right now. From hour to hour, I sometimes feel confident and strong and know I am going to beat this, and then I find myself crying again. Right now I feel so wiped out from the day ...and I haven't even had chemo yet...that I just want to go curl up in bed.

JanP, it's nice to meet you! I did notice the "J" names. It sounds as though your current treatment is doing well for you. That is wonderful.

Favorite Aunt, thanks for sharing your experience with Doxil. My chemo nurse recommended Udderly Smooth. I think I will get some and be proactive as you did.

Maybe one of these days we will all be singing another tune together! I have this mental image of us now, women of all ages and sizes, bailing water out of the boat while we sing together. Our song is keeping rhythm with our arms as we bail. Maybe it even helps keep us afloat.

Here's to sunnier days ahead for us all.

By FavoriteAunt
Posted December 6, 2008 at 8:23 am
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I love the image of all of us in a boat, bailing out the water. You made my day with that one.

Try real hard to be optimistic. You are not alone in feeling that way, but don't let it get the better of you. It's hard with this disease, but good things can and do happen. Try to put your energy into doing something positive - that might help. I've been decorating the house, adding to photo albums, and am trying to finish a needlepoint (when I'm in the mood). Make this a "Pamper Me" day and be good to yourself!

By annejulia
Posted December 6, 2008 at 11:07 am
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Hi Jennali !
I am currently on Gemzar only. I get it once every other week but as I see the CA 125 go up I don't believe it is keeping the cancer at bay. With Carboplatin and Gemzar it went down to normal but with the Carboplatin I had to have a blood transfusion and miss a dosage because of it. I got severely anemic. I don't really know what my options are but I will have a scan in January to see if the mass is growing or just stable staying the same size. This is , for sure , the worse journey in my diary LOL. Thank God for all of you who know what it feels like. Love, Annejulia

By marymargaret
Posted December 6, 2008 at 11:22 am
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Dear Jennali,

My heart goes out to you. I can see how difficult this is for you, and I have an observation, for what it's worth.

In your message you said "For some reason, I had it in my head that I would be one of the ones who did not have a recurrence. And if I did, I figured it would be years down the road. Why I thought I was special, I do not know. I guess we all engage in that magical thinking so that we can go on with our lives and pretend that cancer isn't hanging over our heads."

I love that you said " I had it in my head that I would be one of the ones who did not have a recurrence" but I think what you need to do is have it in your HEART. You've got to really believe, not pretend. It's only "magical thinking" if you're really not believing it.

Look at what you said: "And if I did (have a recurrence) I figured it would be years down the road." Is that what you wanted?

This health challenge is a real test of faith. Decide if you really want to become well and stay well, then BELIEVE you are going to become well and stay well. Don't entertain what you don't want. Get clear about what you want, and then have unwavering faith.

Monitor your thoughts. Take a look at what you're really thinking about. Remember that what we focus on gets bigger. If you focus on fighting this disease, you'll get more to fight about. Focus on being well, being healthy, being the way you want to be. Focus on being happy.

Books that have helped me:
You Can Heal Your Life, by Louise Hay
Ask and It Is Given, by Esther and Jerry Hicks
The Truth About You, by Mary M. Bauer
Happiness Now, by Robert Holden
A New Earth, by Eckhart Tolle

Movies/DVD's that have helped me:
The Secret
You Can Heal Your Life
The Secret Behind the Secret, the Teachings of Abraham

You are in my thoughts and prayers with love,
Mary Margaret

By JanP
Posted December 6, 2008 at 12:59 pm
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My Dear Mary Margaret
That is rubbish. I do not believe that positive thinking will keep the cancer away. You are blaming all of us who have had recurrence and saying that we have not been positive enough. There has been research on this and Positive thinking will not extend your life. Unfortunate but true!!!

I am not saying that it might not make the journey
more bearable and keep our lives as enjoyable as
possible under the circumstances, but please stop blaming us for what is almost inevitable with advanced ovarian cancer.

Good for you Jennali in forgetting the constant threat of recurrence for such a long time. I too put it out of my mind whenever possible but it has returned. Like you I was devastated by the fact of its return and could not control my emotions until I went back onto anti-depressants for a while.

Do you have advanced cancer Mary M?
JanP

By momanderson920
Posted December 7, 2008 at 2:38 am
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I am so sorry to hear about your news. I am possibly looking at a similar route...I will know something after I see my gyn oncologist on Monday. But I have read about girls who did eventually go into a longer remission so we can too! Hang in there. I am a glass half full person so I am one to be giving advise but I do know what does help me and I will share the few things that help me. Talk to friends, family that are good listeners who will boost your spirits, don't forget to rely on your faith, if you have any mood medication PRN take it, try to do things to take your mind off it, visual imagery, and stay connected with your sisters on the site. Those are the things that help me get through this.

By linda_w
Posted December 7, 2008 at 1:01 pm
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Hi - please read my previous posts. IIIC, 1999, on 4-7 week doxil for 8 yrs. Had 3 recurrences (spiked CA125) at which time added carbopatin. To make matters more complicated, the origial cisplatin/taxol cause my kidneys to fail and started dialysis 2 yrs ago. You are going through perfectly normal feelings and taking positive steps in your care. I did use hydrogen poroxide splashes in the shower (for skin and mouth). Needed it for the first few rounds of doxil. I do mugga scans every year or so. I ride with all of this one day at a time, staying as positive as I can, participating in my care, and sharing with others. Let me know if I can input anything else. Linda

By cburns
Posted December 7, 2008 at 1:18 pm
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I agree with JanP. That is what is so heartbreaking about cancer. We can dream, believe and pray that cancer doesn't come back but we really have no control. It is a parasite. I'm hoping Marymargaret only meant well with her message. I am a very fortunate person because I have not had a recurrence but I live in constant fear of one. My doctors treat me as if I still have the possibility of one and they don't sugar coat anything. I do believe that positive thinking is the only way to get through life once you have had cancer and my heart goes out to all of you struggling with advanced stages of this disease or with recurrences. I wish you all well and I hope you have a peaceful holiday.

Cathy B.

By youngmom
Posted December 7, 2008 at 2:14 pm
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It is unfortunate that recurrences happen. However, I feel the need to defend Mary Margaret here. She obviously meant well and was trying to help. And while I don't believe we bring recurrences about by not thinking positive, I do agree that believing we will be cured is extremely beneficial. And yes, there is an abundance of research that does support that ( I know there is research to the contrary as well ), so it definitely is NOT rubbish ! No matter where we are on this journey, we have to have faith that some how, some way, we will come through. Have any of you ever read Bernie Siegel's books ? He cites countless examples of "exceptional patients", the ones who refuse to believe their prognosis, and go on to be cured. So while I do not think anyone brings about cancer or its recurrences, I am sold on the idea that thinking positive and believing in being healthy and cancer free is important.

By joseph2
Posted December 7, 2008 at 2:50 pm
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Matters that seem to require a leap of faith, like matters of taste, are non disputandum. I like the physicist Niels Bohr's response when asked about being a man of science yet having a horseshoe over his door.

"I am told that a horseshoe will bring you good luck whether you believe in it or not!" Bohr said.

Jennali, you must be discouraged, but no matter how you find encouragement, there are encouragements to be had, and all are formidable. Whether by means of belief in positive thinking, God, horseshoes, or exciting research developments, certainly all have the capacity to bring you good luck and great strength as you fight again!

Welcome to Inspire!

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