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Will start third round of chemo

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

Went to the doctor today and he recommends that I start chemo again. My CA 125 is 2700, the highest it has ever been. My CAT scan showed 5 enlarged lymph nodes, three in the neck area and 2 in the abdomen. So I will start chemo February 9th. It will be Taxol and Cisplatin every three weeks. Since both drugs need to be given slowly for me, it will be two day treatment again. This infusion center is open longer than the one in Illinois, so I was hoping it could be done in one day. The doctor said admitting me to the hospital was another option to give the drugs one after the other, but I don't really want that.

It is an hour each way to the cancer center, so I wish it could be done in one day. But I would have to go for lab and see the doctor another day anyway, so this won't be much different.

My CAT scan also showed "chronic pulmonary emboli" which has never been mentioned before. So next week I will have further testing to see if I really do have clots in the lung or if it was a false reading. If it is positive, I will need to go on blood thinners.

The nurse practioner told me that it is very common for patients with cancer to have blood clots in their lungs. I knew clotting problems could occur, but did not know clots in the lung were common. I have not had any symptoms, so I am hoping it is a false reading. I think Diane talked about needing treatment for blood clots in the lung.

My chemo anti-nausea meds will include Emend and Decadron because of the cisplatin. The nurse said this combination reduces nausea greatly. I also have Zofran for a back-up if needed. I am waiting for approval for the Emend from the Medicare D Insurance. I know it is an expensive drug from what others have said. I got it IV as pre-chemo drugs before.

So I have a plan in place. Hope the chemo shrinks to lymph nodes one more time. In peace and caring.

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

Ro, I am so sorry to hear that you will jumping back into the chemo world, but you have had such good responses before and I am hoping you get wonderful results this time too. You have a plan!

I was surprised to hear about "chronic" pulmonary emboli....I always thought that was an acute event, with lots of chest pain, trouble breathing, etc. Will be interested to hear what further testing reveals.

I am always amazed at your calm approach to the ups and downs of your journey...you are a very special lady, that is for sure!

Wishing you the best!

Karen

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

Raising you up with good thoughts and prayers....hoping you breeze through this upcoming round...

Please keep us updated...we are here to keep you company!

Laurie

paris11
Posts: 132
Joined: Oct 2010

Hi Ro,

Thank you for your message. Your love and faith radiates and gives us peace.

You have an arduous challenge ahead. Our prayers go with you.

"Suffering brings patience
Patience brings experience
Experience brings hope
And hope will not fail us."
Romans 5: 1-5

Connie

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Ro, I am so sorry to hear your news. I am glad you have a plan in place. I will pray that the chemo shrinks everything down. You demonstrate such peace and strength in dealing with this cancer journey. I am glad that you had a good trip and stored up the memories. While getting the chemo you can close your eyes and meditate on the blue of the ocean, smells of the breezes and the calm of the water. I will keep you in my prayers.
trish

HellieC
Posts: 425
Joined: Nov 2010

I am so hoping that this third round of chemo will really knock everything back into NED for you, Ro. You have been so accepting of everything that has been thrown at you. The two day chemo regime will be so tiring,I do so hope you get through it OK.
Thinking of you
Helen

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Wishing you super results in this latest squabble with cancer!

Keep up your spirits and know that we are sending good thoughts your way.

Liz in Dallas

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

I know you were expecting this, Ro, but it still sucks. Best of luck to you as you begin your third round. Sending hugs and prayers. Please let us know how everything is going for you and numbers dropping.

Suzanne

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

Glad you have a plan and too bad that hair will go again!!!

You continue to be an inspiration to me. Hugs to you, friend.

Mary Ann

minniejan
Posts: 88
Joined: Dec 2010

Hello,

I too will keep you in my thoughts as you battle forward. As others have posted, you are indeed an inspiration.

MinnieJan

Kaleena's picture
Kaleena
Posts: 1015
Joined: Nov 2009

(((((Ro)))))

Sending you comforting thoughts.

Kathy

RoseyR
Posts: 462
Joined: Feb 2011

Ro,

Am so sorry to hear you'll need more chemo, but on the bright side, have seen fair number of studies showing how effective cisplatin can be for recurrences.

We'll all be supporting you as you emerge successfully through another phase of this treatment.

Stay in touch and let us know how it's going.

Hugs,
Rosey

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

You are a tough warrior, Ro! I'm sorry you must head back into chemo so soon but understand the need to want to knock things back before they can cause any harm. I'm waiting to schedule my PET/CT to see how things are doing although at least my ca 125 has stayed somewhat stable since last check in early Oct. I have about the same array of nodes that you do in upper abdomen and supraclavicular area. My gyn-onc does not want to treat again unless I become symptomatic from issues but of course I assume every ache or pain or odd symptom is related to cancer. He did not even want me to do ca 125 test or scans but I insisted, as I don't want to bury my head in the sand. But we must just venture on with whatever comes our way. It will be my 4-year anniversary of my very eventful debulking surgery this weekend.

I'll be sending positive thoughts your way for uneventful infusions for you and much success as a result!
Annie

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

So sorry you have to go through this again, but from reading your posts, I know you knew it was coming. Its especially disappointing that you have to drive an hour for two days straight, but what can you do. That is what thing the doctor's don't understand...how inconvenient cancer is, nor do they try to remedy it.

I hope everything goes well and you don't get too sick.

Take care,
Cindy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I know you're a tough warrior, as this is just another stumbler on your road with the disease. Sending you positive vibes you're strong to endure this and keep a "big smile" on your face.

Cancer isn't for sissies...show us you can do it!!!

Hugs always,
Jan

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

So, Ro, what game plan do you have in place for preventing neuropathy? Best wishes on your next chemo adventure.

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

I so much appreciate all of your thoughts,prayers and encouraging words. Your support makes this journey so much easier. I have been so lucky that I have not had any problems with neuropathy. I have read what others have taken for their neuropathy, so if I have problems I will consider these. I have such a sensitive stomach, I am cautious about what I take.

If anyone has suggestions for the metallic taste, I would love to try them. I so dread that part of the chemo.

Thanks again for being there for me. In peace and caring.

cheerful
Posts: 115
Joined: Apr 2011

Hi Ro:

I am so sorry to hear that you have to have more chemo. I will keep you in my thoughts and prayers. I wish you all the best.

As for the metallic taste, try root beer barrels or even peppermints.

Cheerful

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I just want to add my support and caring to that offered to you by so many of the other women on this board. You will be in my thoughts throughout your upcoming round of chemo. As someone else suggested, perhaps this round will be the charm.

All my best,

Jill

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

I've bee lurking and not participating, but I couldn't not write and wish you a new begining and end to the bad buggers with your third round of Chemo. You are so positive and supportive of all.
All the best
Sara

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

Letting you know you will be in my thoughts today as you begin this round of chemo...

Hang in and keep us posted on how you are doing!

((HUGS))

Laurie

Tresia23's picture
Tresia23
Posts: 71
Joined: Dec 2010

Dear Ro, I just read your post. I am sorry to hear your news. I hope the chemo will shrink those lymph nodes and get you back some comfort.I can really relate to the long trips for treatment as I travel by car and train to see my oncologist. It is tiring but she is the best and I really trust her. Take good care of yourself and know that we are all keeping your in our hearts. May you be peaceful in mind and body.

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

I appreciate all your comments. I had day number one ofchemowithCisplatin today. Went to lab at 7:00, doctor at 8:00, really 9:00. Then went to the infusion center. Got taken at 9:30, but did not get anything started until 11:30. Finished at 5:45. Long day. But ihave no metallic taste yet,so that is good. I go back to the infusion center at 8:30 tomorrow for my 5 hour Taxol infusion.

My Ca 125 raised to 3240. Hope it drops as quickly as the Carbo dropped it last time.

The oncologist was going to talk to the original prescribing doctor about the blood thinner shots. He thinks I should be able to go on the pills. He is going to let me know what they suggest. When I reviewed my lab work, I discovered that my liver enzymes have elevated since I started on the lovenox shots. I don' t think they even looked at those results. They focus only on the blood counts. Just like on the CAT scan they only focused on the enlarged nodes. I had to point out the pulmonary emboli that were mentioned. So I hope I can go on Coumadin and if the platelets drop go back on the shots.

I feel really good tonight........steroids!!! I am hoping for another good day tomorrow.

Hope everyone is having a GOOD day, too. In peace and caring.

imackie48
Posts: 88
Joined: Nov 2011

Ro, please let us know how your doing, i know your are a trooper and have the best attitude I've ever seen anyone have.
Do you have a good support group where your are living at TI.? I started healing touch therapy hope it helps to restore my energy.
God Bless
Irene

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

Had another uneventful day with the taxol today. I like those uneventful days. We got there at 8:30 and left at 3:00,so it was a shorter day today. Don't think I will be able to get both drugs on the same day. It would be nice, but I would rather the drugs are give slowly and have no reactions.

I talked to the doctor today about the possibility of going on Coumadin rather than the shots. He said the NCCN guidelines recommend a minimum of 6 months of the shots. However because my liver enzymes increased after a week of being on the shots, I will have repeat liver enzymes drawn on Monday. If they increase more I won't be able to take the shots. This is the first time I am hoping for an increase in a bad lab report. I would really like to not take the shots for 6 months. My abdomen is already wonderful shades of green, yellow, and purple bruises. Some of the bruises are about two inch circles. You are not supposed to inject in a bruised area. I think I will run out of places!

A friend told me no more mid drift tops or bikinis. She said it might look like interesting tattoo art! It is nice to have friends with a sense of humor.

Hope everyone had a gooddaytoday. In peace and caring. Mary Ann waiting to hear about your results and plan.

JoAnnDK
Posts: 276
Joined: Jun 2011

Ro, did you have to tell your doctor about the increased liver enzymes or did he read the report on his own? Isn't it so discouraging to think of what is overlooked?

JoAnn

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

You really are a trooper - two full days of chemo!! I hope you don't have to have those expensive and bruising shots for 6 months. Guidelines are just guidelines - I think they need to be individualized and not just rubber stamps.

I'm glad that metallic taste is not bothering you. Hope you are getting some rest now. Do you get neulasta shots too??

Hugs, Mary Ann

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

I also had to point out the mention of pulmonary emboli on the CATscan, too. Just glad I ask for all my copies of lab and CAT scan reports. My husband asked about lab results when I saw the doctor, and they said everything is good. They commented on my 14 hemoglobin, saying they never see that high of a hemoglobin in their clinic. Then when I got to the infusion lab I asked for the copy of labs, since the doctor did not have the CA 125 report yet. That's when I saw the increased liver enzymes.

I think the onocologist only focuses on oncology issues------ enlarged lymph nodes, red blood cell counts, white blood cell count, and platelet counts. I am just glad I know what else to look for when I review my results.

Hearing that Diane had a stroke ,makes me concerned with the multiple blood lots I have in my lungs. They are in both lower lungs, the right middle and right upper lung. Since I have had no symptoms and my oxygen level is good, I hope that means they are small and the body will absorb them quickly, and the blood thinner will keep more from forming. Dianewas treated for blood clots in her lungs earlier, for those who did not know that.

Mary Ann I only had to get Nuelasta shots with my last two sessions of chemo after I had an abdominal abscess and was in the hospital for a week. My second round of chemo I had no problems. They think the abscess was an infected lymph node. That my colon was nicked from the robotic surgery since the node had e-coli in it. My surgery was in Jan and the infection did not surface until June.

Had some nausea last night after I got home. Had to take both zofran and compazine. No nausea so far this morning. And luckily no metallic taste yet. Wishing everyone a great weekend. In peace and caring.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

When I had been on gemzar for about 7 months in 2010 my liver enzymes started rising. My gyn-onc never mentioned this either but I asked about it. I was told up 2.5 times highest normal value was limit for holding off chemo. They did return to normal after stopping treatment (due to temporary NED status). So for you it is possible that the combo of chemo and the blood thinner is affecting yours. The chemo nurse in infusion center told me that is something they look at in test results and anything out of set parameters require a Dr sign off on treatments.

Hope that metallic taste holds off for you as well as keeping nausea in check. You seem to have good stamina for tolerating as much chemo as you have had! I hope my body can handle it as well.

Sending positive thoughts your way for getting issues back under control quickly.
Annie

HellieC
Posts: 425
Joined: Nov 2010

I am pleased that the chemo is progressing OK, Ro, although it is a long two days for you - you are a real trouper.
But it's good to have friends who joke with us and treat us "normally" isn't it? So many people don't know what to say or do and avoid any discussion on the "c" word! I value so much the friends who just "dug in" with me, and continued to pull my leg and make me laugh - they helped me keep a sense of perspective and get some joy out of what is a pretty dire situation.
Hang on in there, Ro, you are showing us the way.
Kindest wishes
Helen

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

Had much more nausea this week than other times. The Emend and zofran and compazine did not really help. I had constant nausea for four days. Luckily no vomiting. Today was a much better day, but still needed zofran this morning. Hope that is it for the nausea. luckily I do not have the metallic taste, yet.

Still continue with the blood thinner shots. The insurance company does not want to pay anything for the shots. Need further justification that they are necessary!! The primary care I started with down here does not have enough information (she says) to order the refills. She wants me to see a lung doctor and have him order the refills for the shots. This is so frustrating. You would think I was trying to get strong narcotics just for the fun of it.

My primary care back in IL is contacting the insurance company. Sure hope everything can be worked out before I need my refill. And I hope I do not have to pay the full price for the medicine. . I still have no symptoms of the blood clots, so that is a good thing.

Wishing everyone a good weekend. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Hi Ro-
It seems when we get in the hands of sub,sub specialists, they each have their jobs and won't cross the line into what they see as someone else's. That being said, having a lung doctor's opinion sure can't hurt. And I definitely hope your insurance company will get the information they need! I imagine having two residences and 2 sets of docs can complicate some things, but geez!

Shortly after my hysterectomy and before beginning chemo for breast cancer, I got a jury summons. I thought it would be simple. My next doctor appointment was with the gyn oncologist, so I figured he could sign off on it. Nope. He wouldn't sign it because from his perspective, I would be able to serve on a jury. The chemo wasn't his job. Oh, the things we learn on this journey.

I suppose it's a good thing that your primary care physician didn't feel comfortable filling the rx - just in case. But I know this has got to be frustrating.

So sorry about the nausea - even with all those meds. Have you tried ginger ale? Sometimes the simple things help. Sometimes not.

One chemo down. How many more?

Wishing you the best,
Suzanne

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Sorry you have had such a time with the nausea this go-round, Ro. I do hope you have now made it over the hump for this cycle but the last thing you need are the insurance issues. Although your 2-state/2 sets of doctors must add to your challenges, the upside of being able to live in best climes of the two locales hopefully eases a little of the frustration.
Hope you can enjoy the rest of this cycle.
Annie

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