kvolland
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Hi Dvacation,
As everyone says welcome to the family. It’s good there here that you have been approved for treatment and I wish you luck with it.
Keep us posted.KrisV
Kelly –
I am so sorry at the loss of your mother. You and your entire family will be in my thoughts and prayers as you go through this.Hugs,
KrisVResection and surgery. Those are the best words to hear. Welcome to the best little family in the world. We also refer to this as a roller coaster ride and we have all found the ups and downs of that ride.
My husband had a resection a year ago on June 4th and we have finished 6 months of Chemo (gemzar and oxaliplatin) in January and finished 5 (well turned out to 6 weeks after a 1 week break) of IMRT with a continuous infusion of 5FU. That was a little rough.
Good luck with everything and keep us posted on how things are going. Remember we are here for questions and just to vent if you need it.KrisV
Dan –
I think Matt covered it pretty well. The meds that seem to work best are a combination of the Gabapentin, Lyrica and Cymbalta. Then resorting to pain medications to cover the actual pain the neuropathy causes. I would definitely go with physical therapy and I would also look into occupational therapy as they can help with upper body stuff and things like dressing, tying shoes, etc. They may also be able to work with the physical therapist to deal with some of the balance issues…..there are exercises and stuff to help with that.
Massage, acupuncture and anything like Reiki may help to. She may not completely recover but should gain come back.
My husband had pretty severe hand and foot syndrome to the 5FU and even after a month off is still having troubles, especially with his hands. Buttons are really hard and he has a hard time checking his blood sugars.
Good luck and hopefully you find something that works well.KrisV
It feels like a giant weight has been lifted off me. I am sure it does for Mark too. I think it’s kind of a let down now too….not sure that it’s the right thought but I’ve been living under such stress and now when it’s gone I am not sure what to do with myself. I am still working and back up to full time that eats up my days but the rest of the time…..kind of unsure. I started a cross stitch project for my sister which helps some and working on the yard but I still feel like something is missing. Strange.
We have scans and labs again on June 10th which will be just over a year since surgery. It’s been such a year.I am so glad I found this group and everyone that cheered me on when I needed…..I got my own wonderful group of cheerleaders and Love each and everyone of you.
KrisV
Sending great well wishes to both of you. Glad to hear that Lisa is doing so well and that the numbers are down.
KrisV
I 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
Okay well I am going to call it good news. The last three days have been pretty good. He’s been up moving around and doing some things around the house (including tinkering with the clothes dryer which died….ended up buying a new one) and he are three meals today. One was only a Carnation Instant Breakfast but still three meals. And tonight he had a real meal of shrimp stir-fry. I thought it might be too much both how much and what it was but he ate it all.
I really feel like we are turning the corner. He is still sleeping quite a bit but not as much but I don’t care about that. He also went over to his mom’s with me and we checked out her mini-donkeys. I suspect we may have a baby one soon and even got just a tiny bit sunburned.WooHoo! Thanks all for your positive thoughts and prayers. It obviously worked.
Today went a hair bit better. Labs came back and they all look pretty good except his liver enzymes are up a bit….bilirubin is up to 0.9 which is still normal but now the new highest since surgery. The rest were just a hair above normal. I have seen them worse.
I did get him to go on a walk today. Not very far down the road but it was a walk. He tolerated it pretty good so that is a plus. Hopefully I can get him to it more.
Also a little miffed that the doc’s office never called me back this afternoon. It was the third nurse in as many days. And again I had to tell her the whole blood story again?! Then they hadn’t got the labs, then she gave me the wrong phone number and now no call back. I am fuming just a little. Deep breath….this too shall pass.
KrisV
Yeah don’t worry about it too much. Mark’s was still over 300 when we started treatment but it slowly came down although there would be times when it went up a little then down the next draw. It was under 20 when we were done. It bounced a little when he started radiation but it’s down again. There is a lot that can affect it including inflammation so it’s not 100% accurate for the cancer. Our ONC said that as long as everything else was good they didn’t worry. He said they would only worry if ALL the liver functions went WAY high and there were other symptoms like jaundice or itching. So all is good.
He’s doing about the same. I drew some labs on him today and that will help make the next decision whether to start TPN (nutrition through the vein) or stick a camera down his throat. I think he was a little better today….more alert and awake so I am hoping.
Thanks, KrisV
Well after the weekend things still aren’t much better. Weight is down to 170# now. He’s still vomiting periodically which bothers even the doc, he said he shouldn’t be. Mark finally is able to tell me why, not so much nausea but the feeling something is caught in his throat causes him to feel liking he is choking. I asked the doc about maybe an upper endoscopy (camera down his throat). He is considering it but wants to see labs first.
So I drew labs this afternoon and we will see what they look like and go from there. I think he is just a little too content in taking fluids IV so I am going to have to work around that.
I did tell him he needed to take the dog for a walk everyday….even if its down the driveway and back which he did do today so that was good.
KrisV
Porter –
Mark’s numbers were up and down through out all of his Gemox chemo. His platelets, red and white blood cells were pretty good through out but his liver numbers jumped around. Chemo can cause your liver to work a little harder to get the medications cleaned out of your blood (doing its job). I believe without digging through all his labs that his liver enzymes jumped around quite a bit. Sometimes they would be just a little high or all high out of range. The only one that stayed really good was his bilirubin and the highest it got was 0.7 which is middle normal. Even his Ca-19-9 seemed to jump around some.I totally understand the worry about them. I obsess about the numbers all the time. I am sure I drive the docs nuts but I think that’s my job.
Hang in there,
KrisVHi 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,
KrisVThank you everyone for your thoughts. Lisa and Jason thanks for sharing your thoughts and story. I think he may be a “little” better today since I got him to eat more. I talked to ONC yesterday and he says all we can do is wait. That some people get beat down more than others so it takes longer. He also said this was one of the roughest things he does to his patients.
I don’t think we are ready for Hospice since we supposedly beat this cancer….hate to think that the cure really was worse that the disease. We have talked about Home Health for physical therapy but he’s a stubborn man.
As for the medical marijuana….he still sees it as an ‘illegal drug’ and says that he’s gone 50 years without using and he’s not going to start now. I think it’s more on principle now rather than any real reason. I am not going to push it for now.
We talked about J-tube but they don’t want to put him through another procedure so if anything it would be TPN but again the labs look good so no need right now.
I guess I just need to be patient….not something I known forThanks again,
KrisVMark had what I was sure was gallbladder attacks, right upper abdominal pain that came and went along with some burping. His last attack was a year ago. PCP worked him up for gallbladder and found nothing. We went to the ER for left upper back pain that we thought was a kidney stone and the CT scan showed a mass at the junction of the bile ducts. We were still working that up when he turned yellow (glow in the dark highlighter yellow). Another ER trip and found bilirubin of 8 and an elevated Ca19-9.
We opted not to do an ERCP since he was eligible for surgery so did not know the definitive diagnosis until three days after his June 4th surgery when the biopsy results came back.
We honestly look back and see the “gall bladder attacks” back at least six years so I suspect it has been there at least that long. As his PCP went back through the labs that he had drawn every 3 months and we see a gradual trend of his liver functions elevating but nothing worrisome. The last set were drawn three weeks before he turned yellow and they were barely abnormal.
This is sneaky stuff.KrisV
