kvolland
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Porter –
I wonder if it is the true neuropathy or the cold sensitivity…..my husband said the cold sensitivity hit before he was even done with the first treatment. It felt like pins and needles in his hands, face and feet anytime he got cold. He did get a little bit of the permanent neuropathy in that he has some numbness now in his feet and legs that was not there before.He started wearing heavy socks, long sleeved shirt and sweat shirts and even lined pants as he did his Ox through the winter. I even bought him a scarf to wrap around his face. I know if Portland was anything like Seattle yesterday it was cool and raining with a little wind and I know from person experience the wind out of the Gorge can be COLD.
Hopefully it will wear off in a couple of days. The worst of his was usually gone in 3-4 days in the beginning then at the end it was closer to 10 days for it to wear off.
Hope it doesn’t get too bad for you. And stay warm.
KrisV
Congratulations on the clean scan. No matter where you in this process knowing that they can’t see anything is wonderful. And having a cry when the anxiety is lifted is perfectly normal….I have more that once.
As for the chemo there are two camps with it….do and don’t. Part of the reason for that as our oncologist has explained is that there is not set in place treatment for cc yet. Unlike breast cancer that has a set recommendations for treatment, cc does not. Our ONC says there’s so many different paths docs take and he says that it is good since that way someone may hit on the magic bullet that will increase survival rates. My husband had clean margins on the second try, one positive node and no distant mets so we could have chosen either way. He wanted to do it all so that he can say he did everything he could.
As far as waiting until after Easter and other important stuff. They aren’t going to want to do anything until your wounds heal and they will need to get a port placed since it sounds like you are a hard IV start so I would bet you will get your wait.
Good luck,
KrisVI will keep her in my thoughts a prayers Porter. I bet you a great source of strength for her as you have been down this road too. Keep us posted on how things go.
KrisV
Percy –
So sorry that things are going the way they are. I know that for me you informative posts have always been welcome and I have learned so much from you. You will be in my thoughts and prayers.KrisV
David and Lisa –
Hopefully everything went well and looking forward to hearing how it went. Keeping my thoughts positive.KrisV
Hmm, makes you wonder. We deal with the Hanford Nuclear Reservation here. My dad was a “downwind” baby which meant he had a significantly higher risk of thyroid cancer and other thyroid problems related to be in the release zone.
Be interesting to see how it all plays out.KrisV
Mom3 –
Welcome to the best little family no one wants to be a part of. You certainly sound like things have been crazy. My husband clotted after his surgery but that was more a surgical problem than anything else. As far as the multiple clots and strokes, that can be a product of the cancer and the changes in makes in the body…..how the body responds to it.I certainly don’t profess to know the answer to how to talk to your dad and make those decisions but I can give you some advice….in my real life I am a Home Health nurse and unfortunately have to have talks like this at times. I would suggest rather than specifically telling him he has cancer and going through the emotions of that again (with short term memory loss he may not remember he has cancer as you already know), I would phrase it more generally. “Dad, if you were ever diagnosed with a terminal disease would you want to be comfortable or would you want to fight to the end?” or “If you had a choice between quality of life or quantity of life, what would you do?” Hopefully that would give you some idea.
The other think is to think back about conversations that you may have had with him about someone else dying. Has he ever said, “Gosh, I wouldn’t want to live that way.” Or “I would hate to be so sick with chemo, radiation (or whatever) and not have a life.” Sometimes they leave us clues in their conversations.
Then lastly ask yourself – how would dad want to live? Wound he want to live like this or would he want to be more active?
It’s tough. I have been there with my dad many years ago when he had a massive heart attack. They tried reviving him but I knew he wouldn’t want to.
Where is you dad being treated? Is it intrahepatic or extrahepatic? How old is he?
So sorry that you have to go through this.
Hugs,
KrisVJulie –
I don’t know about the chemo but I do know that there is no “set” treatment for cc. As you can see we are all over the board on what we all are taking.As for the Vitamin C I am sure that Gavin posted a link to a research article about Vitamin C that had to do with the Vit C. It was a small retroactive study about patients who had good results with the infusion. It had to do with the way the body metabolizes the Vit C infusion versus the oral variety. I am not sure that it would be hurt and if if could help…..
KrisV
Hi Julie –
I hope that you are doing well right now. I think you should be seeing docs and getting all that anxiety out of the way.Sorry I didn’t mean to add more with the neural pathway but it was one that we heard about. I would say “not identified” would be great since as I read back over my husband’s pathology report I see what they saw too. It’s in both the surgery report and pathology report. It sounds pretty darn good to me. I do actually envy you being on of the 10%. That darn Ca19-9 drives me nuts since it’s up and down and every time it pops up, I freak out a little.
As for the drainage, I will tell you what we dealt with….they pulled the surgical drain from my husband’s belly the day we went home. He drained so much stuff out of his belly that after our 2 hour drive home, we had used everything that could absorb drainage. He took his shirt off and used it to absorb the drainage. I ended up putting a urostomy appliance on it (similar to what you use for a colostomy) and treating it like an ostomy. He drained up to a liter a day and eventually it started draining out of his laproscopic site too. It took about 2 weeks for that to stop. Then is incision actually opened up along the top and the right leg of the incision. Took forever to heal.
I will say that any abdominal wounds have a tendency to take longer to heal than most other. A lot of it has to do with the gut being “dirty”. Even if you do a great bowel prep there is still bacteria that hang out. Most wounds will drain a clearish yellow-pink drainage for quite some time (weeks for sure and at times months). Infection would be increased redness, warmth (hot to the touch), increased pain in the area, drainage that is foul smelling with a dark milky or grey color to it. Any of that I would see a doc right away.
And unfortunately most friends and family don’t understand what you are going through here. We have the same issue that after a year no one really wants to talk about it. And I still cry pretty regularly. In fact I had a good one already this morning. And my husbands family doesn’t believe that he is really sick, that I am making it all up just to keep him under my thumb (I still wonder how that works). They have no idea what’s really going on since they won’t talk to me.
Keep us posted and let us know how it goes.
KrisV
PS. You are always welcome to email me if you need a shoulder: dazoo3565@comcast.net
Julie –
I understand about the anxiety. I get it every time my husband has to have one. He doesn’t get upset but I surely do. I keep telling myself that the labs that are being done weekly are all good and that is evidence that everything is okay but it’s still hard.
As far as how the tumor “seeds” I know that often it will track along the lymph system or along nerves and such. My husband had one positive node after his resection. We did find out later (from the radiation ONC just before radiation) that it had tracked along his lymph system and that it had also showed some tracking along a nerve. So that is why he did 6 months of chemo and now we are doing chemoradiation. I would think that if your lymph nodes are clear and they did not find anything else in the liver, you are probably good to go.
Good luck and fingers crossed that all is good.KrisV
Dearest Pat –
So sorry that things have gotten to this point for you and Paul. You know that you are in good hands with Hospice now. I encourage you to utilize as much of their services as possible to give yourself as much of a break as possible…go back to being his spouse and partner and not his caregiver. You are in my thoughts and prayers.KrisV
As had been said, lots of treatments get moves around for a variety of reasons. My husband just missed a whole week of chemo and radiation due to a combination of factors.
It might be worth missing one to have a nice trip and a break from chemo.KrisV
Crissie –
The tiredness I think just goes along with the whole thing. This is pretty stressful on the body. If you aren’t already giving him some, a couple of Tylenol may help with the flu-like feeling. We started giving my husband a couple in the morning and that seems to help.
Food is just tough. The bad taste for food is a really hard one to deal with all the way around. First off start by having him rinse his mouth with a non-alcohol mouthwash – Biotene makes one that increases the moisture in the mouth. Or you may try a little bit of salt water rinse, not too strong but there is a biofilm that can form and that may remove it which can help with the taste. Also using Biotene toothpaste formulated to remove the biofilm and keeping the mouth moist Using plastic utensils rather than metal can sometimes limit the metallic taste. Also red meats tend to increase the metallic taste so sometimes chicken or turkey is better. Using citrus based marinades may help too. In my husband’s case it all just tastes “bad” so he eats just cause he has too.
Hope this helps.KrisV
Well the week is up and we saw the ONC today and they restarted both the radiation and the chemo although the 5FU is at 75% of original dose. Also restarted the Interferon today.
Labs were pretty good although platelets were only up to 100 and I was hoping that they were up over 150 but close enough.
Mark says he’s feeling much better. Bloody noses have mostly stopped and his mouth has mostly healed. He’s eating better and even gained a couple pounds so he’s back over 200#.Now for fingers crossed that we can make it two more weeks then we are done. Wedding is Saturday so he should be feeling alright for that.
KrisV
