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Chemo number 4 (10) -----Day 1

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Today I got the Taxol. Another long day. Lab at 7:45. MY port would not not flush so I had to get a chest x-ray to make sure the port was still okay. It was fine so the put activase in it to open it up. It worked fine for chemo. I had to have a stick in the arm for lab, but she was very good and I did not even feel it.

Met with the new onocologist today. He was very hesitant about giving me any more Carboplatin due to my reactions with the last infusion. He is going to switch it to Cisplatin. He says people have less reactions to Cisplatin. He talked that I could have a severe reaction with this Carbo infusion......anaphylactic shock or even having a Code Blue. He said if I really pushed for Carbo he would give it to me.

I said I wanted something that would work and be safe, too. So he is going to do a skin test before the Cisplatin, to see if I have a reaction to it. If not they will hydrate me with 1000 ml of fluid for 1/1/2 hours, then premedicate me with lots of drugs, then start the cisplatin slowly and hope to finish the infusion in 3 hours, and then hydrate me for another 1 1/2 hours. Making my treatment time from 9 -5. That is if everything goes okay. Apparently this drug is very hard on the kidneys, so hydration is very important.

I am a little nervous about getting the drug, but want to get the drug, too. My cancer marker went from 456 to 118. It did not drop below 35 like I had hoped, but it was more than the 1/2 drop the doctor thought would happen. So at this rate I will probably need two more chemo treatments, if I tolerate the one tomorrow.

The new onocologist also talked about adding Avastin which could be used as maintenance. he is going to talk to my doctor in Florida about doing this and get his opinion. Avastin is approved for ovarian cancer, but insurance companies balk at paying for Avastin for uterine cancer.

So we will see what the Florida doctor says. The Illinois doctor says he wants to follow what the Florida doctor recommends.

Thanks for the continued thoughts and prayers. They are much appreciated. In peace and caring.

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

Great drop in ca125 again! The drugs are doing their job. I'm just so sorry the infusions themselves are so arduous. My gyn-onc likes 2-3 cycles post a normal ca125 so that may be the thinking here too. I will be interested to hear the thoughts on Avastin although I do have BP issues which could be a problem with Avastin for me.
Thinking positive thoughts for you with the Cisplatin infusion tomorrow. Those Carbo reaction stories are a little scary.
Take care, Annie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Good news the skin test for the Cisplatin was negative. So they proceeded with the treatment plan. I got the pre-hydration bag which was Sodium Chloride, Magnesium Sulfate, and Potassium Chloride. It ran for 1-1/2 hours, then the pre-meds which were anothe 1- 1/2 hours. They really medication with two different steroid, two anti-nausea meds, and Benadryl. Then they slowly increased the rate of the Cisplatin every 15 minutes for 1 hour and 15 minutes until they got it up to 250 ml/hr. The Cisplatin went in over 3 hours. Normally they run it over 1 hour. Then I got a post-hydration bag which was the same as the pre-hydration bag. So were we there from 9 - 5:15. But having no reaction is worth spending the day at the infusion lab.

They monitor liver and kidney functions as well as the blood counts. I go for Lab next week. Then will repeat the cycle of 2 days in 3 weeks. I hope this Cisplatin works as good as the Carboplatin did on the Cancer Marker.

I was nervous about getting this after I did research on reactions to Carboplatin, which can be serious after 8 infusions. I was afraid I would have a reaction to the Cisplatin. I hope and pray that the next infusion goes as well. I also hope and pray that number 5 is my last infusion of this series.

I have not heard if Avastin will be added as my onocologist was not in today. I changed to a different onocologist, but have found he is not really in the office that much. So I will be seeing the nurse practioner for my lab and my next chemo. She will consult with the onocologist before I see her, but that does not really give me the opportunity to ask him questions I have. There are other onocologist who are available when I have chemo, in case there is a problem. So I don't know if I will be happy with my choice of onocologist. I will have to see how it goes with the nurse practioner.

Annie thank you for the positive thoughts for today. They certainly helped. In peace and caring.

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

So glad the infusion, though long, went smoothly for you. Hope you'll be able to get that break from chemo soon. I had similar experience with an oncologist when I was first treated for breast cancer. He was highly recommended by my surgeon who was also highly recommended. I stuck with him for course of chemo and then never went back. He was in solo practice and possibly had reached burnout. I never felt like he was really engaged with my care. Sounds like you may have other options in the same group which may make a change easier if need be.
Annie

susafina
Posts: 134
Joined: May 2010

Glad to hear the infusion went well. I had a course of cisplatin. Just keep drinking !!!! Water that is. I am glad you were able to get the transfusion and you did not have any reaction. My problem was that they kept giving me fluids because I did pee enough. Then all of a sudden my kidneys went into over drive and I peed like a race horse aand couldn't stop. I am sending good wishes and I know that you will do well!!!
SUE

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

So glad you got through it Ro. It must be a relief to not have a reaction and to get it done in a "manageable" day. My understanding is that Cisplatin is an older drug and most oncs. moved to Carboplatin because it had a better side effect profile (!) while giving equal efficacy so fingers crossed it does the same for you as the carbo did. I'm sure it will as your tumbling numbers are looking good!
Take care
Helen

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

My oncologist was able to get avastin insurance-approved by making the argument that UPSC is much more like overian cancer than it is like typical uterine cancer. That argument opens the door for a lot of different chemo drugs and procedures, so is a strategy to suggest.

Avastin did not cause me any side effects at all, blood pressure and kidney function remained normal for all 6 rounds I did. Unfortunately avastin did not work with me. But no chemos seem to work with me, so don't let that play into your decision to take it. As long as you had no prior bowel surgeries or injuries, the chance of an avastin-induced bowel perforation is so tiny. My gyne-onc had some reservations about avastin because I had those 28 rounds of pelvic radiation, (because of the bowel perforation possibility), but decided the possible benefit outweighed the risk. I certainly think it is worth a shot if your blood pressure isn't already high and you have no history of blood clots, etc. Once you take avastin in combo with other stuff, you can take it solo afterwards to hold you stable for a long time afterwards.

Sorry the platin drugs are so scary for you to take now, but so glad that they continue to work for you! (((((Ro))))))

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

What a great drop! I was a nurse practitioner and they can be very good. But it's like anything, there are good ones and not so good ones. Most people who choose oncology have a deep committment. I see the NP for cardiology since avastin and she is great. I also see one for pain management. I took avastin for 10 cycles and then developed severe high blood pressure. But she increased the dose from 800 to 1000 (something like that) when I went off doxil. The other thing I use to do when I took the carboplatinum was go back the next day for a bag of IV fluids. It really helped to get it one more time. But I didn't get the potassium and magnesium.

I remember your first notes as being so timid. Now you seem so strong and knowledgeable, not only about cancer but how to live. I am sure you always knew how to live. But now you're teaching us.

Your friend,
Diane

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am an RN and know that Nurse Practioner's offer a very valuable service. I appreciate all their knowledge, skill and compassion. I am just concerned that the doctor is communicating with the other doctor, and the nurse practioner does not have all the information communicated between the two doctors. I may be wrong, but that is my concern. I am going to see the nurse practioner for my lab and next chemo. My other concern is what if I have another reaction, can the nurse practioner prescribe what it needed for the reaction, or does a doctor need to prescribe what is needed.

I am glad I made it through the 4th chemo with no reactions to the Cisplatin I have been more tired with this round, but I think it is the steroids and compazine combination. I will have lab work done on Thursday to see how the kidney and liver function is doing.

Diane I hope your spirits are up and you are continuing to prepare for the celebration of the June Wedding. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

You've had some really crazy and scarey side effects, Ro. Your oncologist seems to be keeping a careful eye on you and that must be comforting. Glad the lab numbers are continuing to go down. I think I went through chemo being pretty doggone naive. I really had no idea how nasty it could be. I hate the cliche of saying "oh, you're so brave" when I think we do what we have to and that we do it has nothing to do with being brave - we're scared ----less. So, I'm just going to send my best wishes, hopes, and prayers to you as you go through this, and hope you can feel our support with you throughout.

Suzanne

hopeful girl 1
Posts: 454
Joined: May 2010

Ro,

Sounds like the treatment is working and you are on the right path.

You are in my thoughts and prayers for strength and healing.

Hugs,
Cindy

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

Ro, I was so relieved to hear that your CA125 had continued to go down and that your last treatment went so much better. However, a 9+ hour treatment makes for a very long day. I suspect you were exhausted by the time you got home.

You are an amazing lady and have certainly had your share of challenges...I am thinking it is time that rough sea calms down for you!

Will await your report on how the conversation went between your 2 far flung oncologists. Maybe you want to call your Florida oncologist yourself and see what he thinks. It seems you have a great deal of confidence in him.

Big hugs coming your way!
Karen

Northwoodsgirl
Posts: 571
Joined: Oct 2009

I am catching up on news within the discussion site. Glad to hear that you were able to get port patent and also no reaction to the chemo. Your CA125 is trending down which is a blessing even though not as low as projected. Ro, thank you for teaching and sharing your continued fight against cancer. On a side note I too am an RN...seems like there are quite a few nurses on this board and all about the same age.
Do you remember mixing chemo in the medication room at the hospital without a laminar flow hood or mask. I definately got my first exposure to chemo mixing chemo as a nurse back in the late 70s and early 1980s. I worked for Baxter at the time and we had photographs of blowback of chemo particles out of vials during the mixing of chemo without working under a laminar flow hood. Blessings to you.. and peace.
Lori

Northwoodsgirl
Posts: 571
Joined: Oct 2009

I am catching up on news within the discussion site. Glad to hear that you were able to get port patent and also no reaction to the chemo. Your CA125 is trending down which is a blessing even though not as low as projected. Ro, thank you for teaching and sharing your continued fight against cancer. On a side note I too am an RN...seems like there are quite a few nurses on this board and all about the same age.
Do you remember mixing chemo in the medication room at the hospital without a laminar flow hood or mask. I definately got my first exposure to chemo mixing chemo as a nurse back in the late 70s and early 1980s. There were microscopic photographs of blowback of chemo particles out of vials during the mixing of chemo without working under a laminar flow hood. Blessings to you.. and peace.
Lori

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

What I remember even more how sick those patients were that got those chemo drugs. That was my greatest fear when I started chemo......that I would be sick the day of chemo and many days after chemo. They have certainly come a long way with the delivery of chemo drugs. Thanks heavens for us they have discovered the pre-chemo drugs and post chemo drugs.

I had my lab checked yesterday to see if the kidney and liver function is still okay. Everything looked good. My blood count continues to do well, too, so I will be on schedule to get chemo in two more weeks, on Wednesday and Thursday. One 8 hour day and one 9 hours day. Still hoping for the CA 125 below 35......maybe only one more treatment. My fingers are crossed. In peace and caring.

nancygt
Posts: 86
Joined: Jan 2010

Ro, I am a week out from my fifth chemo with Cisplatin (combined with Adriamycin)and thought I would share a few thoughts. I have 3 different oncologists-my local plus ones at MD Anderson and Moffett. All 3 concurred that Cisplatin was the drug most likely to give me a lengthier remission. Two of them told me that it is more powerful than carboplatin but had mainly been replaced by carbo due to lesser side effects. So maybe the allergy to carbo is a blessing in disguise.
Do heed the warnings about getting lots of liquid as I let myself get dehydrated and developed a nasty urinary tract infection and adding sulfa drugs to my unsettled stomach has been an adventure.
I have had problems this time around with nausea and vomiting and while the IV Zofran has worked, the pills have not. We are now trying an older drug, phenergan, and it seems to help, just makes me drowsy.My white blood counts went down and neupogen has boosted those. My red counts and hemoglobin went way down and we had to do transfusion and I now take Procrit shots.My first two chemo regimens with carbo/taxol did not have this much impact on me but I just keep telling myself that it is kicking the cancer's behind along with mine.
Good news is that it is working. Ca 125 has been good indicator for me and it has gone down from 200 to 38. Scan showed many of the new small tumors had disappeared and even though the larger ones have shrunk 20-30% and they do say each treatment has cumulative effect. If you have not read postings from Helenforhope, she is a 23 year ovarian cancer survivor who credits her very thorough debulking surgery and a 3 drug chemo regimen with Cisplatin for her survival (they used to put you in the hospital for it before better nausea drugs). Also gdpawel has some interesting posts as he considers it the big tough drug that gave him good results,albeit with some tough side effects. I reread their posts sometime when i am getting down over how hard this chemo is and the toll it is taking and I regain my resolve to make it though. We are scheduled for 7 so I keep telling myself the next one will be the next to last one.
hang tough as the results can be worth it all.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I appreciate the input. It is good you are responding so well to the combination. Sorry to hear about the side effects though. I have been nauseated this first week after treatment, which I usually am not. It is usually the third week of treatment that I have my nausea. I have compazine and zofran to take. The doctor did mention phenergan as an option, but did say it would make me tired. That's why I don't like the compazine as it makes me sleep. The zofran does not always work though.

I am able to drink a lot of fluids. Nothing really tastes like it should, but I drink anyway.

You mentioned a consult from Moffitt. Who did you see at Moffitt, as that is where my main gyn/ono is at.

I will read the posts that you referred to. Thanks again for the information. In peace and caring.

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