Problems in River City….what next
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Julie, glad you are home. Reading your post reminded me that while I didn’t miss any chemo sessions once they started, both my initial chemo round and my later chemo/radiation got pushed back to start by several weeks because I had stupid infections/dehydration and was in the hospital. My oncologist wanted me to recover from those before I got started on the other, so I’m sure your new docs plan will be fine! And, as kris said, the chemo keeps working after being administered, so you’ve got that going for you.
I think your chemo plan sounds good, given your other health concerns. You sure don’t need to be sitting by the side of the road and feeling bad. I’m all for liking and trusting your local oncologist. I just got lucky with who I got referred to first.
Enjoy getting your flowers planted. Happy birthday/Mother’s Day.
Oh, my! I need to respond to so much… (Deep breath)!
First off, I’m happy to hear you are home! And, judging by the length of your post, you are feeling better?? I hope, anyway.
Kudos for the new onc! You need to like your onc! This is most important! And she should be able to consult with mayo or somewhere else if you just want a “real” cc hospital involved. I need to say YAY! again that you like an onc!
As for the port: I guess it depends on how hard you pulled on the IV. I used my power port in 3 days, so that hopefully isn’t a problem. But I never pulled at it, so I hope nothing happened. It’s the best thing I did, even if I STILL feel it when I lay on my side. A small price to pay.
As for the numbing cream… I got it, but after the 2nd time, I didn’t bother. It’s got to be put on 30 min prior (or something) and it’s messy. And after the initial stick, accessing my port doesn’t usually bother me. After 3 years, I think I’ve had problems accessing it 2x, and maybe 4-5 times it bothered me the whole time the needle was in there.
My hosp has new adhesive covers for the ports. And they use a swab on the skin first to keep it from sticking as badly. Of course, that makes my skin red and itchy, but they don’t have the old stuff anymore.
Blood clots will labor your breathing. I’m just glad to hear they caught and are treating them. And, yes, the chemo is discouraging, but it works for a while, so even though you only had one treatment, hopefully it’s working. Try not to dwell on that right now: get yourself better so you can start again.
All in all, your last post sounds promising, for the fight when you restart. I hope it’s soon! Keep your chin up, and enjoy being home! I went through hospital stays and delays when I first started, too. Unfortunately, it seems to happen quite often.As of tonight (Sat) , I am home. OMG, it felt so good to feel the air on my face when we got outside the hospital doors. My release was delayed until 6 p.m. because my GP had set up a 2nd opinion/consult with an oncologist through Hall-Perrine Cancer Center (this gal was the onc on call today). She met with us most of 2 hours….wanted the story from the beginning. I expressed my concerns….and then she told us how they do chemo/treatment ….and what she could offer. She answered my questions and without going into details, I was comfortable with her to decide that we’d do the chemo with her locally instead of traveling the 3 hours to Mayo each time. My Mayo doctor was really discouraging us from doing that, mainly for comfort reasons, the fact is that I’ve now had the blood clots and with diabetes, and other issues, the potential is for more problems which would be better handled immediately and not in the middle of no-where on the road (nothing much between us and Mayo). Another considerationfor me, is that while my husband is more than willing to make the drive up to Mayo each time and stay when needed, he’s already under a great deal of stress at work (unrelated to my illness…he can take off whenever he needs to) and I’m seriously concerned for his health. He’s worked stressed to the point of talking retirement and he’s very worried about me. I told him that WE were in this together……it wasn’t just about ME. HE has to stay well…..to get us through this mess…..and I can’t do this knowing I was compromising his health as well. We’ve been certain at one minute that we were staying here…then to Mayo for chemo instead…and back again, so many times, it feels like whiplash!!! I need some stability….but have to feel safe. I feel comfortable enough with this new oncologist …that she is going to watch over me better, to push forward here locally…..so that is what we’re doing. I am quite aware that I may still have some difficulties, but if she (and associates) follow through as promised, then they should get me through them. The plan is to use this next week as my week “off” as it would have been ….(missed day 8 chemo last Tuesday because of the blood clots) and ignore the fact that day 8 infusion was missed. We will forge ahead with day 1 of the 2nd round May 21st. The incision healing that had gone backward under the “care” of the hospital wound specialist, has now improved after two days of us taking back care on our own (while in the hospital). I’ve gotten the dead stuff removed again and Allen (hubby) is back to packing the incision with the silver cloth stuff. We’re taking pictures of the wound each dressing change…which we could then show to my GP…and even the new oncologist….which has helped a lot. After we got home tonight, our son showed up with one of our favorite meals and then after sitting in my recliner…I fell asleep as did my hubby. We’re both exhausted. Tomorrow….Mother’s Day…I’m going to go out to the green house center to buy my outdoor flowers to have the kids plant them (their labor is my delayed birthday gift). Life has to get back to normal…as much as possible as soon as possible. Thank you again everyone. I’m tired…and going to bed.
Iowa Girl
Hi Julie, My brother also recently went through similar situation and has resolved. Feel better!
LabradorI don’t know. We always saw our doc in the infusion room when he had chemo and then they had separate consult rooms for when we don’t do chemo. They were private rooms when we were doing any sort of chemo (I loved that) and then semi-private when it was just fluids. Both of the times that Mark had reactions to the chemo we saw the doc again….once our own ONC and then one time ours was gone and we saw the on-call one. And then when we were doing the 5FU and having so many problems, we got to see him on a non-normal day to make decisions. We normally only saw him on Wed when labs were drawn but Mark was so sick we saw Mon and Wed one week. I guess I would want to have a doc around with the infusion in case something goes wrong….Mark had anaphylaxsis to the oxaliplantin the last infusion. It was scary and I was glad there were docs close.
Julie – I know you will make the best decision for you on this. Go with your gut, it’s usually right.KrisV
Oh my Julie, hope you are able to get some answers and get all of this under control soon. Having cancer is bad enough without all these additional hassles.
Wishing you lots of luck getting it all sorted out.Love & Hugs,
DarlaI-yi-yi. I don’t even know what to say. I used to think if it was some weird thing it would happen to me, but you know, we may be related that way.
I’m so sorry you are having all these complications. Sometimes I feel like I don’t even feel sick from cancer, but complications.
I’d try another stab at taking to the nurse navigator. But, I’d also definitely understand if you switched where you are getting chemo. I will say I never saw my oncologist in the infusion room. (doesn’t that sound like some funky bar in NYC? Where they infuse the air with something? That was always what I thought.). But then, I didn’t ever experience any problems. I don’t doubt they could/would have called him immediately and he would have hopped down the two floors to see me.
I had a few struggles with accessing my port early on and man, they are not fun. I hated them feeling around for my dots and I learned real fast I needed a 1″ needle and only that would do, so I wasn’t shy about speaking up.
They use a cold spray here, not a cream. I’m not sure it really makes a difference. Hang in there. Nowhere to go but up!!!!!
To my CC Foundation Family,
I am currently on day 5 of Heparin therapy following the diagnosis on MOnday of a blood clot in my left leg and a spray of small clots in both lungs. Today, my INR blood test (for the Coumadin) was at 2, which is the bottom of the 2-3 range it needs to be for me to go home. My doctor tentatively told me this morning, that barring something “awful” happening (doubtful it will) that I will be dismissed tomorrow to go home on just the coumadin therapy. I find myself having a harder time breathing when I walk….but I assume it is because my lungs were affected by the small blood clots. But, I get in four walks a day….a couple at least 4 rounds of 500 feet each (2000 ft).
I had an IV in the crook of my arm for the first two days….which was always sending off an alarm…and very uncomfortable. So, for a day, we discussed using the power port for my Heparin IV. It’s still fairly new…implanted on April 29th and I had just finally been able to turn my head without discomfort. AFter I finally said for them to go ahead and access the port…I asked for the anesthetic cream to numb the area….which had to be ordered….with a rush (A rush in the hospital means that maybe they’ll get it in an hour). It came in 45 min…leaving enough time for the Pikk team to still insert the port before they left for the night. When the Pikk team arrived, they discovered that the nurse had applied the anesthetic cream to the incision line…not the port area….so there went the numbing. Then the Pikk nurse couldn’t find the 3 dots…and commented that I had an old style port without them. (No, I do not have an old style….this definitely HAS the raised dots). She finally decided to put in the needle….but it didn’t go any further than the layer of skin. Then…after a lot of pushing and prodding to try to find the three dots again…she gave up and tried it again anyway…and it did finally go in. (Hurt ) They covered it…finished the procedure with the Tegaderm bandage….which was the cause of burning for the next 24 hours….I am sensitive to the adhesive. They finally changed to a different bandage the next day….and that finally ended the pain I had from the burning of the adhesive.
Tonight, I managed to get the tubing of the port IV tangled under the rollers of the IV pole while standing up to hug someone…and pulled hard on the port IV insertion area. Now, we are watching to make sure it isn’t leaking the fluid into my tissue. Oh LORD…I hope I didn’t dislodge that port. The Pikk team member checked it before leaving for the night and thought it looked okay…that the needle was still in place….but it needed to be watched.
Since I only had one infusion of the first round of chemo, my Mayo oncologist has mentioned that I will probably need to just start over. I’m bummed!!!
Still weighing the options on where to do chemo ….not going back to the local oncologist where I had the first chemo. My choice is to either have it done here in town at a different chemo /cancer center with my Mayo oncologist running the show from Mayo at a distance…or us driving back and forth to Mayo for chemo (3 hours one way). My Mayo oncologist was discouraging me from doing the later when I spoke to him for a few moments this afternoon. He was concerned for my comfort….but frankly, I”m concerned for my life after this blood clot event….where the oncologist had several chances to catch the clots far earlier….but he misdiagnosed one time…and then he didn’t come to the chemo room (he was only 15 feet away) when I had trouble with breathing and chest tightness. (We think that is when one blood clot moved into my lungs). Then, he failed to come out at the end of the chemo to check on me, so I left there believing what I was feeling must be normal side effects of the chemo. I’m soooo mad…and now scared all over again.
I have NO idea what to do about where to have the chemo. Someone suggested talking to a hospital social worker…who then gave me the name of a cancer nurse navigator….but she did not call me back today. It makes me crazy!!!
Iowa Girl
Julie T.Hi Julie, sorry you are having another set back. I hope this gets resolved quick and that you feel better soon.
PorterHi Julie –
So sorry for the setback and it is just a small one I promise. So glad that your GP was on top of things. Your answer to why is probably all of the above. Surgery, chemo, decreased mobility, diabetes and of course the cancer diagnosis itself which can change the clotting ability of your blood especially when the liver is involved. Chances are the clots in your lungs started from the one in your leg, small ones broke off and then got caught in the small veins and capillaries of your lungs.The heparin will be for a few days in the hospital until you blood gets thin enough and the warfarin (coumadin) gets up to speed. If you are not therapeutic when you get ready to DC then you may go home on heparin, lovenox (enoxaparin) or Fragmin injections until your INR is high enough.
INR is a world you will hear a lot of. INR and Protime (often abbreviated PT/INR) will be monitored closely to keep the number between 2 and 3 although with clots they will sometimes go as high as 3.5.
You will hear all about green leafy veggies and being careful with that but I can sent you some recommendations from the FDA on what you can and cannot eat which I find my patients like. If you would like it let me know.Do your foot pumps and if you get tired of that write your name in the air with you big toe, or the ABC’s or something. Also once you get home make sure you get up and move around every hour even if it just marching in place.
This will only be a small speed bump in recovery. Mark had one in his upper arm from his PICC line. Popped up about a week after surgery and his hand and arm swelled up HUGE. You two have followed a lot of the same course here…..Stop it now
Hugs and hang in there,
KrisVHi Julie, just wanted to say hi. While I cannot help with blood clots thank God you must have a fabulous GP. Are you prone to those? Tell them you gave at the office. Get better real fast!
Hi Julie,
I’m sorry about this setback. I’m glad though they are on the case and can get the blood clotting sorted for you. X
Went to a consult with my GP this morning….and told her of all the stuff hat occurred the week before chemo, during chemo and this past week and she immediately wanted me in the hospital for testing and observation. Her suspicion was blood clots. After CT of my lungs and ultrasound of my legs, one clot was found just below the bend of my left leg and clots in my lungs. Now on Heparin Drip and later Coumadin until theraputic levels are achieved. ….willbe in here probably at least 4 days…maybe longer…just pending on how fast I respond to the therapy.
Having a hard time typing this…could be among my shortest posts.
Any info on this …..suspecting a combination of surgery….chemo….who knows what else.
Julie T.
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