kvolland
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Hello Nd58 –
Welcome to the best little family that no one really wants to be a part of. You will find lots of good support here and we are always here to help, answer questions or just listen if needed.My first question would be where is your husband being treated at? Is this a cancer center that has dealt with a lot of CC. Because it is so rare smaller cancer centers have a tendency to have not seen it much. I would also ask: Have you gotten a second or even third opinion? Sometimes doctors who have seen this more are more on the cutting edge.
I do not know much about 5FU yet, my husband will be starting this is a couple of weeks as adjuvant with his radiation. But we have much experience with the Gem and the Oxaliplatin. He just finished 6 months of that combo. I know the Gem destroyed his veins and the Ox drove him nuts with the cold sensitivity. Had to drink warm water, warm teas and hot coffee, even heated his Gatorade up (Yuck by the way).
As for the pain, what is he taking for pain medications? If what he is on is not working, there are plenty of options to chose from. And as for his blood sugars, they are going to probably be all over the place, especially if they give him dexamthasone for nausea….my husband had a big dose before chemo and the took it for two days afterwards. I wouldn’t get terribly worried about those right now unless they are running really high. The biggest thing is to make sure he is eating enough protein. If you have to make protein shakes or something like that.
And don’t even feel bad about your posts to us. This is such a crazy disease that often you feel like you are on a roller coaster. This is what we are all here for.
Keep us posted and we will support you any way we can.
KrisV
Those are so true and I think another one that is there too, is that all cancers are the same. My husband’s ex-wife had colon cancer and is in remission now for 3 years. She compared her cancer to Mark’s and acted like it was no big deal. I did set her right…..it was my day to upset people
KrisV
Well, I put the cart before the horse with the chemoradiation. We will not be able to do it closer to home as I had so hoped. Mark will have to go to Seattle for 25 treatments. It’s okay though he will stay with his sister in Bremerton during the week and will take the ferry across to get treatments. I spoke with our ONC today and he says they have really tried in the past to do it down here but the can not get local clinic to work with them to get the radiation field the way he wants it. So a little bummed about that.
I did ask him why it was so important to do this and he said that he is following his treatment guidelines for Pancreatic cancer which are different from “suggested” protocols. He believes that chemo first as a systemic therapy to kill any “floating” cells that might lead to mets. Kind of like systemic lawn weed killer treating the entire lawn to off the dandelions before they seed and sprout up somewhere else. Then the chemoradiation to hit the spots where the biggest risk is at. He said that was like spot weed killer that’s just for a couple of dandelions growing.
He has done the same thing with pancreatic cancer and has a greater than 50% five year survival rate for this. And as a nurse I know that is a wonderful number. He does admit that he does not have a big enough CC group yet to see how well it is working but he had hope.
Okay so after that I really buy into going to Seattle. And as a friend of mine pointed out since he will be out of the house during the week, I will get a little break to let someone else watch and care for him. Sounds a little better.
KrisV
Tina –
Sounds like you have a good plan of attack there and you are a wonderful advocate for you aunt.As for the fluid in her stomach….it is most likely ascites which is fluid build up in the abdomen but not inside any organ such as the stomach or intestines. They drain it fairly easily and they can put a permanent drain in if it needs to be drained often. The ascites is from the blood not flowing correctly though the liver due to the liver not functioning as well as it should. It backs up in the veins and the clear part of the blood leaks out into the stomach. Sounds worse that it is for the most part. It does often make noise when it sloshes around.
As for the cancer it sounds like maybe both lobes of the lover and inside/outside the bile ducts which means that the tumors are actually in side the bile ducts causing blockages. I wonder if there has been any talk of stents or a biliary drain (this is a tube placed to drain the bile to the outside of the body) which can help relieve the pressure on the liver. It may be a question to ask.
Good luck and keep us posted.
KrisVDani_ya –
Welcome to the family officially. Glad to have you aboard but sorry at the same time. Unfortunately no one can make the decision for you and your mom but we can sure offer out 2 cents worth.Where is your mother getting her treatment at and has she had a second opinion on the surgery? If you have not had a second opinion on the surgery then I would try like heck to get one. It may even mean gathering your mom’s medical records and shipping it all off to another cancer center.
As far as standard treatment, I can speak to the Oxilaplatin. I know there are other that will chime in on the Xeloda and clinical trials. My husband had 6 months of Gemcitabine and Oxilaplatin. He tolerated it fairly well until the end with 2 of 3 last treatments giving him a reaction of nausea, hives, swelling and difficulty breathing (not a common reaction). Otherwise the biggest problem he had was cold intolerance. He could drink nothing cooler than room temperature and mostly drank it warm such as warm water, teas and other things. He had to dress warm and wear gloves but that is mostly gone now ( 2 weeks since last dose). He was a little fatigued toward the end but not too terribly.
Good luck with the decision.
KrisVWell, now that the Seahawks have won, life is so much better. Just kidding but it really made Mark’s weekend.
After much talking we are definitely going ahead with the chemoradiation, not sure it was really so much a decision but wrapping our heads around the logistics and the fact that we weren’t done as we hoped. I fired out a couple emails today to docs to try to get them all coordinated for this. I emailed our Infectious Disease doctor since I want him on board before the port is placed and to work with us on preventing sepsis this time….Mark had three hospitalizations this summer after the port was placed. I also emailed his ONC to find out about the drugs on top of the 5FU that he will get. I suspect it will be Interfieron and Leucovorin. Once I find out for sure I am going to see if we can coordinate getting it locally which will allow both of us to continue to work as our local radiation center is only about 15 minutes away. If not then he will spend the week days with his sister who is only a ferry ride away from Seattle and then home on weekends. He won’t be able to work which bums him out.
Looking forward to getting forward with this since it means closer to the end.
BTW, I also really got to look at radiology reports and the actual films….it was really interesting to see those. But I did get a little frustrated because there was stuff on the reports that they didn’t tell us. Or told us well after the fact was going on. Lesson learned, I will ask for copies as soon as available to make sure they don’t do that any more.
Thanks for all the positive thoughts.
KrisV
Fellini –
I did a little research into your health system and did find that you may be able to get some help in the home for your mother. In the US we have Home Health which can be an excellent resource for people who have conditions such as your mother. Also we have Home Care (private pay mostly) which can help continue her independence at home. I found that if you were to contact your local (your mother’s local) CSSS you may be able to access some resources for her that would be beneficial and if not at this time, maybe later down the road. I did have a little difficulty since it was in French and I unfortunately do not speak French…..I had to use a translator so I may have missed some stuff.
Here is a link that will take you to information that may help.http://www.santemontreal.qc.ca/aide-et-services/servicespartheme/aines-et-soutien-a-domicile/
Hope this helps some.
KrisV
WooHoo! Porter so glad to hear that. I am sure it has not been an easy recovery but having the surgery is just making things so much better. And hopefully a load off your mind.
Take it easy once you get home and let yourself be pampered. You deserve it.KrisV
Porter –
So glad to see your smiling face online. I hope that everything went well and you are doing well. You have been in my thoughts all week.KrisV
Linda –
So sorry that you had to join our family. It has been without a doubt a tough struggle over the last year and a half for both of you. I am glad that you have hospice on board already which will help things tremendously. Be sure and ask what services are available if you haven’t already. The hospice I work with has volunteers to spell you if needed and complimentary therapy such as massage, aroma therapy or music therapy. Also if you start having any issues at all ask you social worker for help.
As far as his night terrors and confusion there are medications other than the lactulose that may help. Sometimes medications such as Haldol or Seroquel can assist with managing all of that. They are anti-psychotics that are often used in this situation. Even risperidal may help too. Be sure and talk to you hospice nurse and get there help…..that is what they are there for.
Remember we are always here and willing to lend an ear always.KrisV
Dearest Fellini –
So sorry you and your mother had to join us here and so sorry that it has been the road that it has been for both of you. I suspect you are choosing the best path at this time, of course not the one we would want. I say at this time it’s quality of life so go out if she is able and have some good times and memories.
Remember we are all here for you and you will always find an ear to listen.KrisV
Melonie –
I would suggest that you talk to your doctor. Your numbers are without a doubt running too high. My husband too is a Type 2 diabetic and we have struggled with it off and on through this, mostly after chemo because of the steroids that he was given before and after chemo. One of the things that we did before his surgery and have kept it that way was that we eliminated his oral medications completely and switched to insulin for control. He uses a baseline insulin that he takes twice a day and then he does a quicker acting insulin before each meal. It does mean he has to check his blood sugars more often but he has much better control.I would definitely call your doctor as soon as possible and explain what is going on. Those are too high and I worry they won’t do chemo if they are that high. Also remember that stress will play havoc with blood sugars and there is no doubt some stress in your life.
Keep us posted.
KrisV
Tina –
Well, welcome to the best little family no one really wants to be a part of. Sounds like things have happened pretty fast and you are both overwhelmed. One of the things I would encourage is to get a second opinion from a cancer center that has dealt with the CC more. And always remember that we were not born with expiration dates so there is no knowing how long any of us have.That being said I would make a list of questions to ask the ONC the next time you go. Ask point blank about surgery. Is is an option? Could it be an option at some point? Would radiation of some sort be an option? Ask the questions, take a tape recorder so that way you don’t have to write or remember everything that is said.
As far as eating and sleeping, the sleeping is typical. Her body is fighting a lot. My husband just finished his last chemo and he naps almost all the time when he is not a work. As for what she eats, just make sure the calories she consumes are good calories, try to limit junk food. Protein shakes are great – frozen fruit, couple of scoops of ice cream/frozen yogurt, some plain vanilla yogurt then add milk and blend until milkshake thickness. You can also add protein powder bought a nutrition store. Ensure, Carnation Instant Breakfast those work too.
Good luck, Keep us posted and know you are both in our thoughts.
KrisV
