kvolland
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JanBee – That is such good news. Love to hear about dropping numbers. I will keep my fingers crossed for your scans. My husband’s is the 10th of this month but for once I am not all freaked out. Good luck and keep plugging away at the chemo.
KrisV
Dear Jennifer –
So sorry for the loss of your dad, Nathan. May you find peace in knowing that he is no longer in pain.KrisV
Suzyq –
Welcome to the family. You will find more support and suggestions from this site than most anywhere else. I second Lainy in that we definitely suggest 2nd and 3rd opinions with this cancer. You want to make sure also that where ever you are getting treatment, they have experience in treating cc since it is so rare you need to make sure you are at a bigger cancer center.
Chemo brain can be tough to deal with. My husband is just recovering from his second go-round of chemo and chemo brain was worse this time. All I can say is try not to get frustrated….it’s hard. I know things have come out of my mouth I didn’t ever mean to come out. One thing I do is make him exercise his brain just like his body….we watch Jeopardy and Wheel of Fortune most every night and I have him try to play alone. Some nights are better than other.Keep us posted and ask questions that is the best thing you can do.
KrisV
Pat –
So sorry to hear of the passing of Paul. He is finally at peace and no longer in pain.Hugs,
KrisVThat’s all good news to hear, negative margins and no nodes involved. The surgery is pretty rough and it really took my husband about 3 months to fully recover.
Protein can be rough to get in. We still struggle with that. If you aren’t already using then something like Ensure, Boost or even Carnation Instant Breakfast. We bought a protein powder at GNC and added it to protein shakes that I made – frozen fruit, ice cream, milk and then yogurt and protein powder. He loved those. And if you don’t want to use frozen fruit then chocolate syrup or anything like that. I also made soups such as cream of chicken or cream of potato and made them with milk (Campbell’s, not from scratch) instead of water then added a couple of tablespoons of dry powdered milk.
Hope things continue to go well. Be interesting to see what the ONC comes up with for chemo. My husband did 6 months of Gem and Oxaliplatin.
KrisV
Good news Julie. Hearing some good news always sounds wonderful. Hopefully retail therapy adds some to it. Also glad to hear your husband decided to retire. Time for you two to spend some quality time together having fun.
KrisV
Olga –
I have said many times that we do not have expiration dates stamped on us anywhere. It might make things easier if we did…..although I would not want to know. Just remember that it’s hard if not impossible to guess how long someone might live even without cancer and the chemo. There are many stories on this site of people who lived much longer than initially thought with and without chemo.
My husband did have surgery with clean margins so there is much debate on if the chemo after really works all that well at keeping it from coming back. My husband’s thought was that he wanted to do everything he could to try to keep it from coming back. That was his same thought with the chemoradiation we just finished. But looking back on it, he does wish he had said no to the chemoradiation since the treatment was almost as bad as the disease.
He did tell me in the beginning that he would only do it as long as he didn’t feel too bad. And several people have started out that way.KrisV
Dear JanBee –
Welcome to the best little family ever. You will infinite support from everyone here….and many answers to you questions.I would call the ONC about the fevers and fatigue. My husband got that way a lot during his treatments so finally the doc just gave me a refillable antibiotic prescription and told me to start it when he ran a fever more than three days in a row. It was Levaquin which is a wonder drug for infections. Seems my husband always fought sinus infections. Of course we did have three hospitalizations for blood infections early on but they never really did fine out why.
Also each round, dose will be a little different. Not sure why but some times Mark would breeze through the week and other weeks it was a struggle to get to the next one. Fatigue and constipation were his two big issues. He thankfully didn’t have a lot of nausea with the first go around.
Hope you work things you and keep us posted.
KrisV
My husband did that horribly during and after radiation….along with bloody noses and significant post-nasal drip. He also developed sever difficulty with swallowing anything with texture. We talked to both Radiatino ONC and regular Onc and they each pointed the finger at the other. Neither had an answer though. He is now getting pretty much back to normal almost 6 weeks after being done. Not sure if it was the radiation or the chemo he did at the same time. I would ask about though.
KrisV
Julie –
It’s hard not to obsess when you are going through this. I did and I wasn’t the patient. I will tell you that in this area (Mark did this and so do a lot of my patients I see) most ONC give a schedule to take the meds by. For two days after chemo (we did chemo Fri so for Sat and Sun) he was to take a Zofran (8mg) twice daily, dexamethasone (two – 2 mg steroid) twice daily and then he was to take prochlorperazine every 6 hours. Then he could take an extra Zofran as needed each day plus he had the lorazepam. Before chemo he always got oral ZOfran (16mg) and the Dex (8mg) and then lorazepam if he wanted it. Taking things on a schedule seems to help.
Mark never really had a lot of nausea with the Gem/OX but with the 5FU, he had lots. With the 5FU he took Zofran 3 times a day and Prochlorperazine 4 times a day and lorazepam if it didn’t work. I always tell people nausea is like pain, you are much better staying ahead of it.Unfortunately as you already know, your blood sugars will be crazy while you are taking any steroids but honestly I would worry less about high blood sugars right now than lows….so make sure you have something if you start to get low. We used honey packets like from Kentucky Fried Chicken….something like that you can just put under your tongue and you body will absorb the sugar then you don’t have to swallow if you are nauseated.
Mark said his ringing was worse while he was doing chemo then for 3-4 days afterwards. We told our ONC but he didn’t seem worried about it. At the time he didn’t seem to have any hearing loss…..now, I am not so sure but it might be selective hearing too.
Talk to your ONC about all of it. There are so many medications out there for nausea that if one doesn’t work then there is sure to be one that does. No sense in being that way if you don’t have to be.
Hang in there,
KrisVComing into this a little late but I really would push HARD to get a second or even third opinion…even if you have to travel some. Even when we were so new to this we didn’t know what questions to ask, both our surgeon and our oncologist encouraged second opinions. We decided not to take the time to seek those out because time was of the essence and we both felt VERY comfortable with who we had seen. Go with your gut, if it doesn’t feel right then move on or at least look for more answers. I would be very leery of a doc that diagnosed stage IV cancer just based on labs since there are other things that can make the numbers rise….or combo of things. Just my thoughts.
KrisV
Julie –
Sounds much better for you this time and I am so glad for you….you deserved it.
I so wish I could do your port access for you….I am one of those good ones and love doing it because truly if you do it right it should only sting just a tiny bit, not as bad as a bee sting even without the numbing stuff. Mark’s port thankfully is not that way. Of course he is so skinny that you can see the whole outline of the port….the shape, the three marking bumps and then line as it goes up his chest and into his neck….truly a blind person could access it.
Keep a positive attitude….don’t think about getting sick or tired….mind over matter. I believe that is a big part of it.KrisV
Lainy I would love to come down and take care of you. Not only to spend time with you but to enjoy the fabulous sunshine down there
Julie I am working on a counted one that is bees, flowers and a hive for my sister. She had started raising bees (I guess that’s what you do with them). She just loves having them around so I thought it would be a great thank you for her. And I have a HUGE tote full of partially done or never started. Probably could start my own craft store.
