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What a week!

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

PET/CT on Monday, and labs. INR was too high, so no Coumadin for 2 days. Saw my regular medical onc and had labs again Wednesday morning. INR had come down. CEA dropped back to a flat 4! Good news on the PET/CT! I have one node in my chest and 3 in the abdomin. They are all still about the same size, give or take 1/10 of a centimeter. But the metabolic activity has dropped some. The chemo can't quite take out these nodes - my tumor load is just too high. But it is mostly keeping it under control for now. We talked about this chest pain I've been dealing with, and I asked if it could be heartburn getting worse. He didn't think so, and wanted me to see my primary and have my heart checked out (again). He also said that even though I was going to see the rad onc, I needed chemo this week. It will take up to 2 weeks to get me set up for radiation. At the time I just nodded, but was thinking that i'd make that decision later - after I knew what the rad onc planned. I did get my flu shot before leaving.

Knowing I'm stable is still not good enough for me. I REALLY need a chemo break. I want these nodes destroyed. So I saw the radiology oncologist in the afternoon. We were there for 4 hours. The doctor had emergencies going on. One was someone with mets pressing on the spine causing severe pain and problems - he came in needing emergency treatment. The onc kept apologizing to us, but really I was fine and told him so. If it were me needing the emergency treatment and the techs needed his help, I would hope to get it too. He took a LOT of time with us showing us everything and really explaining. This is the first time I have seen my PET/CT's and fully understood them. He actually used an older scan to show us, when the nodes were more active, so we could more easily point them out. Same nodes...

Now, one is in my chest, fairly high. It is just below collarbone level, and just to the left of center. It sits very close to my esophagus. So if we do SBRT, instead of the usual 3-5 treatments, it will be 10. This is to reduce the chance of too much damage to the esphagus and making it hard for me to swallow. But it is doable with SRBT - just modifying for safety.

The three in my abdomin are pretty close together, but kind of form an arc. They are about at belly button level. They are close to my kidneys but he is confident he can get at them without compromising my kidneys or liver. But where the problem comes in is my bowels. They are very close, especially the smaller middle node. So I need a planning scan lying on my belly. We know SBRT can't be done on these lying on my back because there is not enough room in between the nodes and the bowels. But if the nodes stay put, and my bowels fall slightly foward if I am on my tummy, it will work. This is the one time I am happy that my physical body is falling apart. I have not had my usual exercise the last two years, and while I am still somewhat thin, my tummy is a bit flabby, and the muscle is just gone. When I hang my tummy, it hangs! This could be in my favor.

If we can't get more space between the nodes and the bowel, he is not willing to risk SBRT. The risk for bleeding that won't heal, or bowel perforation is too high.

The good news is, that if SBRT won't work then I will still have radiation. He feels it can be safely done with standard radiation. He said that since chemo hasn't taken these nodes out in a year, it is time to help out with radiation. His theory is that I probably have cancer cells in most of my abdominal lymph nodes in that area, but that chemo can keep them knocked down. The 3 nodes are what have been there all along (even from the PET right after my surgery, before FOLFOX). They are stubborn, and they send off enough cells now and then for other issues - like the 2 paraaortic ones I had before, and now this one in the chest. He feels if we can get rid of these 4, the tumor load will be so low that it can be easily handled. In most cases maintenance chemo would be the thing to do even after the radiation, but I really, really need a break. So if radiation is successful, I will take a chemo break and we'll watch my CEA closely, and scan every 3 months, till something shows up that requires either SBRT or chemo. If I have to do the standard daily radiation it will be for 6 weeks or so. I hate that idea, but will do it. The problem is I don't dare be off chemo for those 6 weeks. That is too much time for something new to pop up before we reduce my tumor load enough for my body to stay on top of things. Maybe I could go to every 3 weeks instead of 2 though. I just don't know how I will ever make it to radiation on chemo... I could go first on infusion day. But I just don't think I could go on Friday after infusion, or Saturday or Sunday. Monday is pushing it, but could be done most cycles, if I have a driver. So I am really hoping for SBRT.

I was supposed to have a planning scan Wednesday. But it got too late for me to take the contrast and still get the scan. So we scheuled for me to come back and do it Thursday. Which meant I would not go to chemo Thursday! But then I opened my mouth - I asked him if they could keep an eye out for any clots when they did the scan. oops... He wanted me to go get checked for clots right away. The planning scan won't show them. So I called my primary and he sent me to the ER.

We were in the ER all night. My heart checked out fine. No clots. They ran every test under the sun, including the lab girls coming at me, two at once. They got blood for cultures out of each arm. The one was standing up far away and kept pulling on the needle. There is a lot of scar tissue in that vein and sometimes it can hurt when I get labs - especially with some idiot making the needle move all over. I tried to grab it with my other arm to stabilize it, and the other lab tech yelled at me because she wasn't done with me. So I said to keep the other tech still, and not pulling my needle all around, or I would not cooperate! Every blood test under the sun, urine sample, and cultures, along with an EKG, and a CT. The blood presssure machine kept malfunctioning. It would pump up super hard, really hurting. Sometimes it came down a tiny bit at a time, with big lags in between, and other times it wouldn't come down. I just got my flu shot and it did not hurt. It didn't bother me all day. but after being stuck in the vice from the bp machine, it started to hurt. It was VERY sore last night and today. So I've learned a lesson - if you get a flu shot and end up with a BP cuff on "auto" make sure they use the other arm! I finally got to go at midnight. The ER doctor said to double my acid reducers and see if that helps. If this doesn't get better, follow up with my primary again. The other concern is a narrowing artery, but not blocked. I took an extra omeprazole before bed last night and took two today, and the chest pain is a bit better. All of this might have just been heartburn! ;) But considering my record - the other 3 times I went to the ER with chest pain it was a PE, a clot in the subclavien vein, and pericarditis. So this is the first time it wasn't anything serious.

I had chemo yesterday. No Avastin though. Since I have the risk of skin sores from radiation that might take a few months to heal, Avastin would really mess with that - I wouldn't heal for a year, if ever. So w/o Avastin, and with my INR back in line, the nosebleeds have slowed and I expect them to stop!

I will do a planning scan next week. With contrast for the PET/CT Monday and contrast for the CT to look for clots Wednesday, I could not have more contrast this week. So I am to call in Monday and make an appointment if I'm starting to feel better after chemo. Maybe a Tuesday appointment. I'm ready to get the show on the road and do something different to attack this cancer.

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

Sounds like you might be on track for your plan to work. Praying that this is so.

What a rough week you had!

Keep up the good fight!!

Mark

buckeye2
Posts: 428
Joined: Jul 2011

I hope for a better week for you. You deserve it. Lisa

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

dear kathryn,
wow, what a week indeed. all your treatments are a bit hard to follow, luckily for me not been down the path your on. i just hope the radiation knocks out the 3 nodes.
the heart stuff is scary, thats why i am trying to stick to my ridiculously healthy diet.
which is supposed to be heart friendly as well as anticancer. i can only hope.
goodluck!
hugs,
pete

Annabelle41415's picture
Annabelle41415
Posts: 6687
Joined: Feb 2009

You have been busy with all that has gone on. Good news that your CEA is coming down and that your tumors are stable. Wishing you the best for your upcoming treatment.

Kim

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

oh on your tummy- wondering if on all 4s would make a difference, let it all just hang down, potentially giving you even more room?
this to me is exciting news and so happy you are taking a proactive approach to this. I pray for a chemo break for you Kathryn!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Kathryn,
What a week indeed! You are doing an incredible job of managing your care and seeing that you get what you need. I know you must be exhausted from it all. Thank you for sharing in detail what the docs and you are considering as a plan of action. As you know, Dick has dealt with nodes and it is good to hear what others are doing.
You remain in my prayers. I hope you get that needed chemo break soon.

Aloha,
Kathleen

relaxoutdoors08
Posts: 520
Joined: May 2011

Kathryn,
Glad to hear you are on your way with the plan. Prayers for continued good results on all tests and procedures so you can have a SUCCESSFUL TREATMENT. Please keep us informed so we can keep you in our thoughts and prayers.
Hope and Prayers,
NB

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

your plans! Un abrazo!

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

I do like seeing you control your treatment protocol yourself...I too have enlarged nodes in the chest area and I like you want them out ASAP...Whether they think necessary or not if they are leaking cells into my system then why not remove them...They said that surgery may be an option if they shrink...If it is not an option to them then it will be for someone...I like my cancer laying on the table in a pan, then they can decide what they want to do with it...and these nodes will be removed, you can bet on that....My best to you Kathryn ..it seems as though you have your head on straight...full steam ahead.....blessings to you and yours..........buzz

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