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Yesterday was chemo day, and it was a good day!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm going to be lazy right now. I'm just copying and pasting from my CaringBridge. I'm getting tired tonight.

As has been happening to me the night before chemo, I did not sleep at all again - up all night long. But, usually that is ok because they knock me out with all that Benadryl and I sleep for 5 hours at chemo.

Thursday - the dreaded chemo day...

Yesterday was chemo day, and it was a great day! Nope - I'm not "losing it." That would be my first thought reading anything written by me that said chemo day was a good day. ;) But I’m still sane – well, as sane as I’ve ever been.

Both girls took me in for chemo. I started to worry about having them both with me when I got my scan results. If they were not good, I didn’t know if I wanted them sitting there through that. When I got my bad scan news in September, I was alone. I kind of wished I had someone there for support, but then again it gave me a chance to let it sink in, and prepare how to tell my family. I think that is better than having them go through the shock in the doctor’s office.

But no worries – no bad news. Fantastic news! It was nice to have the girls with me to share in the joy of the day. There is no new activity anywhere. The most prominent lymph node is an aortocaval lymph node at the level of the mid-kidneys. It measures .8X.7 cm. and has a metabolic activity with a maximum SUV of 2.1. The same node was 1.1X1.5 with max SUV of 5.9 the end of August, and measured .9X.8 with max SUV of 2.8 in mid November. Great quick response to chemo! The 3 nodes have now shrunk back to normal lymph node size. The activity level is called low to moderate (just because the one is over a 2, at 2.1 which makes it moderate). A SUV under 2 is considered ok. The two periaortic nodes are normal again, and one of those started with max SUV of 6.6. The other periaortic lymph node started under 1 cm (normal size) but had an activity level of max SUV 3.1 – now it is normal. So this is a very good response! My oncologist says this is the best response he could have imagined – to be clear again in just 8 treatments!

Now comes the great news that follows a great scan. I had been complaining about how hard the last couple cycles of chemo were for me. So this is a little funny. My oncologist said that with such a great response so quickly, he was going to recommend a change. He said I have a few options, but he would try to sway me into one particular option. New studies out of the Mayo Clinic and some others have been recommending that when there is good response to a drug, and someone with Stage IV colon cancer gets the cancer back under control like this, that they back off and save that drug for a future recurrence. Cancer cells are tricky little guys and do become resistant to chemo if exposed to it for a long time, so that they can mutate to learn to get around it. They’ve found that 6-8 treatments can be enough at one time of some of these drugs, to get things back under control. Then it is best to pull them to keep them in the bag of tricks for later. (ONLY if the cancer is not showing as active anymore – otherwise you stay on them till you reach that point.) This is what he was going to “try to talk me into.” HAHAHAHA! No need to talk me into that at all – I am 100% for it! So after 8 treatments with Irinotecan, the evil drug, I am done with it for now!

Due to winter weather, my Avastin did not arrive. It was stuck in another city. My oncologist wanted me to delay treatment till it came in, but I told him I did not want a delay because I want to feel my best for our upcoming trip. He agreed to go ahead with chemo yesterday. Double bonus! I only got the base drug of 5-FU. I just needed the pre-meds of Emend (anti-nausea), Aloxi & Decadron (also anti-nausea plus a little help against allergic reactions and other issues). Then I got my pump hooked up and we were out of there. With FOLFOX I was in the infusion room for 10 hour days. And FOLFIRI was 5 hours days. With just the 5-FU, 90 minutes! Yippeee!

And the other good news – they have come up with a new way to give Emend. It is a much higher dose on infusion day. I would have been done with my infusion even sooner, but it takes longer to get the Emend now – they have to put that high of a dose in more liquid for infusion. But it lasts for 3 days. No need for pills at home. Anything given in infusion is major medical, and paid for that way. Any pills come from the pharmacy and this drug has a large co-pay of $75 each time. I got very lucky and had other cancer patients send me Emend they no longer needed to save me the last several cycles. And now I won’t have to worry about it anymore.

So I am still stuck with the pump for two days, but this has been so much easier! It is still chemo and still not any fun. But comparatively, I’m not begging anyone to shoot me, and I do feel human – just like a tired sick human. On the worst chemo drugs I can’t even say that much – I do not feel like a human then.

I have no excess saliva, and wow does that help with nausea, not to be dealing with that. I’ve been slowing down on the dripping bleeding nose, and not having the drip down the throat helps the nausea a lot. I can eat and drink without having a Kleenex in one hand! By the time I get back from our trip, I expect that my nose should be healed again. I will have to get Avastin again when I return, so I will have those side effects of runny/bloody nose to deal with again. He is keeping me on that drug. He says the studies have not shown cancer to get resistant to it. That is because it is a totally different drug, which works differently; it is a monoclonal antibody. http://www.chemocare.com/BIO/avastin.asp

My oncologist says I am now on “chemo-light” as he calls maintenance chemo. Same dose of 5-FU, and I will also get the same dose of Avastin. I will still be on the every two week schedule. After my trip (where I get an extra week off chemo), I will have two more cycles which will be the 5-FU and Avastin. I wasn’t going to tell him about my next trip till after I returned from this one. But seeing how well things were going, when he said I needed my appointments scheduled for 3 weeks, 5 weeks, and 7 weeks, I mentioned the 7 weeks would need to be rescheduled due to my stepson’s wedding. I told him we planned an extended vacation after it as long as my scan was good. No complaints from my doctor at all. He said that now when we have the cancer under control the game plan changes. The goal is for me to have quality of life!

I may choose to go off all chemo after a few more cycles if everything is still looking good. We are monitoring closely. We’ll check my CEA with every chemo cycle, and I will have another scan in 3 more months. If all is still well then, I may choose to take a long chemo break. We would check CEA monthly, and scans every 3 months, so if it comes back, we’d know right away. CEA has been an accurate monitor for me. My oncologist says I may have a 2 month break from active cancer, or it could be 2 years. The idea is to keep my cancer under control, and still try to protect quality of life. He feels that if he can keep me around for a couple more years, there is a good chance of a cure. There are some very promising drugs in trial right now, and more coming. He also told me not to get too involved in researching what is going to trial right now, because that will change in 6 months, and he doesn’t feel I would need to look at any trials personally for at least 6 months, and hopefully longer.

My oncologist is a bit of a drill sergeant. He pushes hard. He says it is his job to push hard and tell me to suck it up. He has a great track record, and every medical professional I run across, in oncology or not, says he would be their pick for oncologist if they ever got cancer. He pushed me hard and got me to come out looking clear last spring. And now with the recurrence/continuance, he pushed me hard till my scans are clear again. And instead of continuing to push so hard, he is letting up now that scans look good. Neither of us is delusional – we know that I am not cured. It is just a matter of how long I can go till we see active cancer again. It wasn’t long last time. But now we know better – we won’t trust the cancer – we will keep a very close watch for it to return. But in the meantime he won’t continue trying to kill me with chemo! I know some people are not happy if their oncologist isn’t continually telling them, “You are going to beat this thing.” They expect no matter what stage they are that their doctor should be talking curative always. But I’m ok with an oncologist that tells it like it is. That is my personality too. Sure there is a slight chance I could be cured right now. But the chances are larger that this will return at some point – we just can’t predict when. I’d rather be prepared, than to think I’m cured and not stay on guard.

I was so excited yesterday. The girls were too. And no one complained about getting out of the oncologist’s office at 12:30 instead of 4:30! Instead of feeling like the week before, wanting to die before I could even get home from infusion, I felt pretty good as we left. I was well enough to stop for lunch on the way home. We went to Chipotle and I had a big veggie burrito to celebrate!

I came home and crashed. No Benadryl induced nap, and no sleep the night before. I got up to go to my son's basketball game. Then I slept from 8:30 till 6AM. I worked all day today, but I’m a little slow on chemo. I work about ¼ speed. I’m tired, but running on the steroid high from the Decadron; with no Benadryl to counteract it.

Tomorrow is disconnect day. And Sunday I do NOT have to get a Neulasta shot! My oncologist is very confident that without the Irinotecan my blood counts will be just fine. So I won’t go through the several days of achy joints and feeling like I have the flu, along with the bad bone pain, and feeling like I have broken arms. I can’t even come close to explaining my joy of doing just 5-FU this cycle and no Neulasta shot! HOORAY!

Thank you everyone for your prayers, positive thoughts, good vibes and energy. I would appreciate continued prayers that I keep this cancer from growing and spreading for a long time, and that I can get a complete break from chemo sometime soon.

Hopefully I can get enough break to get back on my bike this summer and train for RAGBRAI. My brother’s town (one over from my parents) is an overnight town this year. So no matter what, I really want to try and ride the day into Altoona from Boone, and the next day out to Grinnell. Nicole is talking about wanting to ride. Michael might be interested too. It would be a lot of fun for all of us to ride together with my brother and his team for the week. It is so exciting to think of returning to real life again!

Yes, today I am hooked to my poison. Yes, it sucks. But it doesn’t suck half as bad as with the other drugs. And it is so exciting to know I’m winning the battle again! So chemo day or not, today is a great day!

I give thanks to God, and to my great medical team, and to my family and friends for all the wonderful support you give me.

AnneCan
Posts: 3692
Joined: Oct 2009

What fantastic news all round. It sounds like you + your oncologist have this figured out. I am so happy for you! What wonderful news to share with your daughters.

sasjourney
Posts: 395
Joined: Jul 2010

Kathryn,

What fantastic news!!! I can feel your excitement and gratitude. I am so happy for you. Enjoy feeling well again. You are in my prayers to stay NED forever.

Hugs,
Sara

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

for you...you are so deserving for this respit..Take full advantage of it...You are one heck of a lady and it sure is a great day for us in here to hear that......Love to all of you, Clift

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kathryn,

I can just hear the excitement exuding from you as I read what you wrote. Congratulations-wonderful news!!
You go girl! Such an inspiration to me- maybe that could even be me!

Have a "super" weekend-

Hugs,
Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Planning a trip to Isla?
Hugs!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

In one week! My sister's family and my parents are going too. I'm going with my husband, and my oldest daughter joins us the next day. My other three cannot go - two have college classes and the other high school classes that they cannot miss. Plus someone has to take care of the house and cats. My brother's family cannot go because my stepdad is his cover for when he is gone. He is the sole proprietor of a computer business. I am sad that they won't make it.

We'll be a few days late for our anniversary, but close enough. We have celebrated all but last year's anniversary on the island, since we were married there. Monday is our 8th Anniversary!

I'll be back for one month, get in two more cycles of 5-FU (with Avastin the next ones), and then I am back to Isla for my stepson's wedding. And staying for a few more weeks. I will celebrate my birthday there!

And I have a certificate for one free spa service at Rolandi's I will use this trip! I'm invited there to celebrate my birthday next trip. And I will stop in for breakfast on my morning walk at least once this upcoming trip. It is one of my favorite places in the morning. We gave my stepson and fiance a honeymoon at Rolandi's for a wedding gift.

Any chance you and your wife will be visiting the end of March or early April? It would be fantastic to meet you for dinner at Rolandi's!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

They are going to give you the Mexican citizenship ! LOL.
Unfortuadely we can't as our " mexicans" are comming here by those dates, if everything continues as they are, ( prey for that) we will be there by mid July, will you be there by those dates?. In the meantime please have a carpaccio de boquinete to my health!
Hugs Mate , disfruta de Mexico!.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi kathryn,

very interestng read. I hope your return happens as soon as possible and your good health lasts a long long time.

cheers,

Pete

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