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Good news -- not so good news with 3rd chemo treatment for recurrence

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

I went for chemo number 3 on Tuesday. The good news is my cancer marker went from 1530 - 439 (normal less than 35). So that was wonderful news. I asked the doctor what goal we were working for. He said ideal would be normal range. So with the big drop, maybe one more chemo will do it.

I get the cancer marker results after I see the doctor, so He does know how the last chemo treatment lowered the cancer marker. I will call him to see what he recommends regarding the next chemo treatment. I think he will want me to have one more, to get any of those migrating cells, but that is just my opinion

The not so good news is that I had a reaction to my second chemo drug (Carboplatin). I had hand itching, tightness in chest, increased heart rate. Then I got nausea and vomiting, and then diarrhea. They stopped the drug and gave me medicines for the symptoms I was having. Then they wanted to run the medicine over 6 hours instead of the three hour rate. Since it was 6:00 p.m when I had the reaction, and the Infusion Center is only open until 9:00 p.m, they could not finish the infusion that day. They did not get anymore of the Carboplatin on Tuesday.

There were no rooms in the hospital, so I could not go there to finish the infusion. So the decision was to come back on Wednesday to finish the infusion. So we left here about 7:30 p.m. on Tuesday and had to be back here at 8:30 a.m.

When we got here the pharmacy decided to discard yesterday's bag and start with a new bag of the full dose and run it over 6 hours. That did not get started until around 11:00 a.m. , so it will be a long day again today. They gave me different pre-meds so I hope everything goes okay today.

So now my chemo days are about 13 hours with all the premeds, and chemo meds, instead of the nine hours. I don't know if they will decide I need two days instead of one for my treatments. In Quincy I hope that is what they decide. I will talk to my doctor here and see what he suggests. I don't know if splitting the drugs affects the way the drugs work.

Otherwise, Tom and I doing great. We plan on coming back to Quincy next week sometime. We will be home for sure by the 17th, but maybe earlier if your wether stays as nice as it has been, and I am feeling okay.

Thank you for the continued thoughts and prayers. They are working and are much appreciated. In peace and caring.

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

Ro--

First I want to say that I am thrilled for you that your CA-125 dropped so dramatically. That is excellent news. I will be sending you all my positive thoughts for a drop into the normal range after your next treatment.

Your reaction to the carboplatin must have been frightening, and your wait to complete the treatment must certainly have been frustrating. I'm sorry for that and also for the resulting length of your chemo days. However, it's reassuring that pre-meds and the possible option of splitting doses will likely enable you to continue treatment that seems to be having such good results.

May the GOOD portion of your news take over and become all the news there is.

With caring,

Jill

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Looks like you're getting the right drug combo and are fast on your way to a second looooonnnng remission! The reaction sounds scary and unpleasant, but you have a plan now to avoid it. I take this as GOOD news, very good news!! :D

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

that your marker is dropping nicely - that is reassuring that you are responding well to tx.

I also had reaction to carboplatin - scary. This was addressed by starting decadron at home 12 hours and 6 hours before infusion started. It worked for me. Don't know if this is option for you.

My best wishes as you continue tx and may NED be your friend very soon!!

Love, Mary Ann

Kaleena's picture
Kaleena
Posts: 1224
Joined: Nov 2009

Ro,

That is good news with the large drop on your CA125. So sorry you had to have the reaction but it seems that they may have it worked out. Those long days must be tiring for you.

Looking to hearing soon about your being done treating. Sending comforting thoughts your way.

Kathy

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Sorry that this new life as a CSurvivor is so frought with the extremes, as a roller coaster ride. But if you look at it that you are still in the game getting ready for the next Right, fun,scarely and all, you'll have strength.

Just go and have sugarless hot coca and a yummy turmeric popcorn bag while you are biding your time. Hugs,
Sara

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

It sounds as if you've definitely got a good chemo combo working for you - that drop in CA 125 is great and, as Linda says, must herald a move into a second remission soon.

The reaction to the carbo must have been pretty frightening, but I am sure they will work out the best way through it - hopefully they can load you up with something prior to the infusion, to avoid the reaction and then return to the shorter infusion time. A 13 hour chemo session is no joke!

You are so nearly there, Ro - hang on in there - we're all pulling for you.
With warmest thoughts and wishes
Helen

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Ro, It was sooo good to hear about your huge drop in the CA125 level. That is surely a sign that your chemo is kicking this cancer! But, I was so sorry to hear about your reaction and the incredible LONG time that you were at the chemo center. Am praying that your next treatment is MUCH shorter and without reactions!

Sending positive healing energy your way!

Karen

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

I appreciate all the comments. Day 2 of the Carboplatin went better, but I still had another reaction. When I got there they had another full bag of the Carboplatin. I thought I was going to finish the bag I had started the day before. I don't know if they worry about contamination since the bag had been opened. It was another long day. We got there at 8:30 and left at 5:30.

Anyway I had a full bag to run over 6 hours. They gave me Benadryl, Zantac, and Decadron IV and then Zofran by pills. After I got 100 ml of the drug my hands started itching again. They stopped the drug for 20 minutes and the itching stopped. They started the infusion again, and I did fine. They gave me more benadrly IV after 3 hours to try to avoid another reaction. It worked.

They called the doctor and he said if I had another reaction we would have to stop the drug. I did not want that to happen. The doctor told the nurse he was being so bullheaded about me getting the drug because it was working so well for me. I am glad he was being bullheaded because I really wanted to get the Carboplatin. I actually got a larger dose, since I got some of it yesterday in the first 100 ml.

He said if I had another reaction, he would suggest I be admitted to the hospital and challenge the body with small doses and gradually increase the dose until all the medicine was given. They would premedicate before each challenge. He said it takes about 12 hours and that insurance will not always approve this method, as Carboplatin is not a drug that needs to be given in the hospital.

The nurse also suggested that maybe taking an antihistamine like Zyrtec twice a day for three days before chemo day may avert the reaction also. Mary Ann said that she took Decadron before her infusions. In Quincy their pre chemo meds did include Decadron 20 mg the night before and 20 mg in the morning by pills. So I will see what this new onocologist recommends.

I have a call into the doctor here with some questions. If my CA 125 drops below the 35 with this chemo will I need another treatment. I really hope that 3 gets me belowe the 35. They I want to know what the follow-up would be and how often, and when would treatment be needed again. This doctor is the expert on UPSC and my onocologist in Illinois is a medical onocologist. So I like to get this doctor's recommendations.

My steroids keep me awake until 2:00 a.m. I have 3 more days of taking the steroids, so I might be having those "hamster days" again.

Hope all is going well with all of you. If you are having treatment, they are going smoothly. If you are enjoying NED, you celebrate each day. In Peace and Caring .

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Keep your focus on the good news Ro! That was a great drop in your ca125! I do hope the antihistamines and steroids can keep your reaction under control to reach your target number.

When I did carbo/taxol back in '08, I premedicated as I do for CT contrast (I've had reactions in past): 50 mg prednisone each at 13, 7, and 1 hours prior to infusion appt, plus the decadron, benadryl at infusion ctr. Quite a steroid punch pre-treatment but I've never have any reactions. This routine was their standard not due to my contrast sensitivity.

BTW, my gyn-onc liked me to have 2 or 3 more treatments after <35 ca125s before stopping chemo. But this could be because I was on a second line treatment (Gemzar) not the 'big guns' you're on.

Pulling for you to hit your number!
Annie

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

The doctor did not feel that my CA 125 would drop below 35 with this treatment. He thought it would probably go 1/2 the number and then with the next treatment go 1/2 again. He said he could be wrong, but that is what he would anticipate. He said if it was below 35 he would still recommend another treatment. He thought probably I would need at least two more treatments though.

As far as follow-up if it gets below 35 he would recommend only doing the Ca 125. He would wait for 2 rises in the CA 125 before doing a CAT scan. That is unless the first rise was 2000 from the 35. Or if I have any symptoms than a CAT scan would be warranted.

Since I had the reaction to the carbo he would recommend the desensitation in the hospital. He felt it was very important to continue both the Taxol and the Carbo. But he did say it does not affect the drug effectiveness if they are given on different days.

So I feel good going back to Illinois with a plan. I hope I surprise them and my CA 125 does drop below 35 with this treatment. Who would have thought it would drop that much with the second treatment.

No side effects yet from the chemo. Hope that continues. In peace and caring.

RoseyR
Posts: 464
Joined: Feb 2011

Dear Ro,

So sorry to hear you've had a hard time with the carbo.

As I recall, you'd had three earlier treatments of carbo/taxol with very few reactions; am I right here?

So I can't help wondering how MUCH carbo you're receiving if the infusion (even the shorter version) takes so long to administer. (My own sessions of chemo with carbo/taxol, once every three weeks, last a total of five hours: half an hour for premeds, three and a half for the taxol, and only an hour or so for carboplatin.) So has your oncologist dramatically increased your dosage?

If you scan through my responses to an earlier post, i describe three supplements my integrative doctor put me on to avoid severe reactions to either drug:

AHCC (whose use is supported by many clinical trials), 500 mgs three times a day;

Glutamine (to reduce peripheral neuropathy), one tablespoon a day in a glass of water, three times a day starting the day before chemo and continuing the first four days of chemo);

High-quality fish oil (three teaspoons a day).

Ideally, before starting chemo, your vitamin D level should be at least 35 to 40 and your B-12 level should be at least 500; an injection can bring it up.

Whether it was these supplements or not, I had absolutely no side effects, to my astonishment, through three rounds of carbo/taxol other than occasional fatigue. At the end of three rounds, I did wind up with somewhat low hemoglobin, but nurses say that's common after three rounds.

So Ro, I am concerned about how MUCH carbo you are getting--or whether your body has been adequately prepared to handle it. If you want further details on my supplemental regime (my doctor, who once headed the Integrative Institute of a prestigious teaching hospital in a major city) will not prescribe anything that isn't supported by many clinical trials), feel free to ask.

Best,
Rosey

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

I appreciate your concern. I had 6 rounds of Taxol/Carbo in 2009. My first Taxol infusion I had a reaction( kaledioscope vision, dizziness, taste in mouth). So that is why the taxol goes over 5 hours. Whenever they tried to increase the rate I had side effects. At the slower rate I do fine. My Taxol dose has always been 318.

My second infusion of Carbo I had a reaction (high blood pressure 190/120 and Heart rate 160). They slowed the infusion to go over two hours and I had not problems. MY carbo dose has always been 535.

Then I started the Taxol/ Carbo again in 2/11. The first two infusions went well. Since it was my 7th infusion the recommended infusion time is 2 hours. But since mine was 2 hours before, they increased the infusion time to 3 hours. During the third infusion (really 9th) I got tightness in the chest, itchy hands and redness, and increased heart rate - up to 129. My heart rate was 70 before the chemo started.

The second day as soon as my hands started itching and got red they stopped the infusion for 20 minutes and then were able to resume the 6 hour rate. So I feel I am getting the correct dosage. My body just doesn't like the drugs, but with the drop in the CA 125 I feel like it is working.

I am lucky I have not had any peripheral neuropathy, but am reading so much on this site about the Glutamine. I will check into that further.

I was told not to take the Omega 3 while on chemo. So I stopped that while on chemo. I did have my Vitamin D checked and it was okay. I do have some Vitamin D to take, but while on chemo I have had such heartburn when I take it, I stopped that for now, too. I tried Bio Curcurmin (Tumeric) and it too gave me such heartburn, I will wait to take it when I get off chemo.

The doctor said he did not expect my CA 125 number to drop below 35 with this treatment. He thought it would just go down by 1/2. He said if I was staying here for my next treatment he would put me in the hospital and desensitize me to the Carbo. I don't know what my new onocologist will say. This doctor feels it is very important to get both the Taxol and Carbo.

Thanks for you comments and concerns. In peace and caring.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

You have really fought hard with this second round. I am proud of you! I would be interested to see what they do in the hospital to desensitize you to carbo. I am glad they can do it. Let us know what the protocal is.

I am glad you did not get neuropathy. That is my hardest thing to cope with. I am on alot of medications but they help. It comes from my treatment for breast cancer years ago and my reactions to taxol.

Adding you to my prayers.

Love,
Diane

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

I'm so happy Ro that your CA 125 levels have dropped so dramatically. I'm also pleased to hear that your oncologist wants to help you continue on the Carboplatin in spite of the side effects. I hope you'll continue to find ways to tolerate these scarey side effects because it really sounds like this is the drug of choice for you. And how about surprising your oncologist with your next CA 125 numbers being under 35?

Suzanne

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Thinking and praying for you....Keep up the good work!

Cindy Bear
Posts: 564
Joined: Jul 2009

That is a dramatic decrease in nos.. Good to hear. sorry about the reactions and having to slow things down.. that sucks. I am amazed at how calm you seem, how able to just take everything in stride. You are a lesson in patience and fortitude.
Hoping the numbers continue to drop rapidly
Hugs,
Cindy

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