kvolland
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Well, he’s home now. I guess there was some talk about giving him one dose of another drug in two weeks to cover the “missed” dose this time but no one knows for sure….Hmmm our ONC is at a conference this week….LOL. But I got a copy of the lab work and his CA 19-9 is 16 which is the lowest it has ever been so that is good.
And yes I think I want to throw a “Chemo Done” Party but I don’t think I will do it until after the 31st when we know for sure.
KrisV
Percy –
I am a big advocate of quality of life versus quantity of life. I think I would chose less time if it was quality time. I think a lot of people don’t think that way…..and I don’t always think doctors understand that either. It seems I have had more than my share of end of life talks.What I want to see is something that keeps the quality of life and adds some quantity too…..not asking for much am I.
KrisV
Marion –
I didn’t feel any pressure about it. I did look ahead at the calender and I see a couple that I would really look at once this part of the coaster is done for us. I think my head is going to explode right now.
My husband is part of the Long-Term Follow-up Study for Childhood cancer and has been since 1976-77 when he had his Hodgkin’s. I finally remembered to call them about the second malignancy and they are all over it. I am in the process of getting medical records for them…Their doctor….Dr Greene called and was very interested because it’s such a rare cancer and he did not think they had seen that in their study yet.
Phew….opened a can of worms there.
But I think there was one later in the year about Palliative Oncology and another Palliative conference that would interest me a lot and then a couple others.KrisV
Hi Danielle –
It is so scary I agree with you. You dad is only just a little older than me and I have a 20 year old son (who just battled thyroid cancer and won) and a 22 year old daughter. I know how scared they were when my husband was diagnosed.
I am with everyone here…..second, third, fourth opinion if you need it. And make sure you ask how many cc patients they have treated. There is no need to give up hope. Here’s a link that has some survivor milestones and there are some that have many, many years living with or beating this disease. It gave me hope to see how long some have lived.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8883
Hang in there and remember we are always here. If you have a question some here will have a suggestion or an answer or a place to start looking.
KrisV
Jules –
It drives me nuts when docs act like that (the second doc). There is no reason for that at all, EVER. I am not normally a terribly violent person but I want to slap them upside the head (I am a nurse so I run into them periodically). We knew going into my husband’s surgery (not the ALPPS but a regular resection). He said there was an elevated chance he could die from the surgery but he said there a 100% chance he would die by not having the surgery (I am not sure now that it was a 100% chance given those hear who are still here) but we opted for the surgery then chemo for what we hoped was the best chance. After a 14 hour surgery I wondered at times.I would go for a third opinion.
KrisV
Dear Mabsmith
Glad you found us too but like you wish you hadn’t had the need to. This can be such a roller coaster ride for everyone involved and you will be glad just like I was that you found us.
Her health before I am sure will help her get through this. Protein is so very important for a variety of reasons but the biggest being that it helps with healing and recovery. Carnation Instant Breakfast is great. Things like Ensure or Glucerna can help (some don’t like it though). Whey Protein powders can be mixed into milk shakes.
I would say getting her up and moving will be a slow process but you should be able to make gains. Set up small daily goals….ie today walk 20 ft three times and then slowly increase as she feels stronger (you can start where ever you need to, less or more). Sometimes a cane or walker can help with balance issues. You may ask for a Physical therapy referral too….either going out to a therapy clinic or home therapy….just ask.Good luck and don’t forget we are here for any and all questions.
KrisV
Marion –
I will look into it but I guess I should qualify that by saying I probably won’t make any decisions until after the 31st when we have the CT scan, Chest x-ray and labs to find out if Mark needs any further treatment. But without a doubt though I will be looking at attending.
The nice thing is I need CEU’s for my nursing license and I can use any conferences usually as credits and then it’s a write-off too. Triple bonus really.KrisV
I am going to have to look ahead at some of these conferences. I would love to go and San Fran is not that far away although I would travel further. I suspect our wonderful oncologist is going to be there since we won’t get to see him this Friday. He said he was going to be in San Francisco. It you see Dr Picozzi, tell him Hi!
Have a good time and bring back lots of info for us.KrisV
Porter –
There are so many things I have swore I would and wouldn’t again if we went through another surgery…I am sure I will think of more.He had his surgery at Virginia Mason in Seattle which is really close to the University of Washington. Dr Flavio Rocha. He was awesome. Of course I was in such shock when he told us it was cc (even though I knew and had read about it before hand) that I didn’t even look him up until after surgery. He trained as Memorial Sloan Kettering which we have been told is one of the top places….of course on here, I see others. He does about 6-8 surgeries for CC a year and sees about 40ish people a year that aren’t resectable (his numbers and I don’t know for sure how accurate). I love him and they do a tumor board there that has the surgeon, oncologist, interventional radiology, gastroenterologist and multiple other disciplines meeting. We didn’t actually see them but have seen the reports and it’s in line with what I have learned here.
I believe that as long as you feel comfortable with your surgeon that is half the battle.
Oh and another thing is to stock up things at home. I would make sure to get some adult puppy pads (that’s what my husband calls them) but they are the flat absorbing pads they put under you at the hospital. Those are great to put under you in chairs and beds to prevent soiling if drains or wounds leak. If you come home with a drain that needs flushed ask them to give you the flushes before you leave. They are prefilled syringes with saline in them. If you have a wound that needs dressing changes, ask them to send a bunch home with you. And take all those plastic tubs and all home with. They throw it away and you paid for it. And you may find use.
If you want you are welcome to give me a call. I can answer questions now and even after surgery. 360-880-0327.
KrisV
Porter –
WooHoo for surgery. That is the best anyone can ask for with this. Mark had his the 4th of June and we were in such shock that I didn’t even really get nervous until the day of surgery. Part of that had to do with having a bile drain put in before and getting sick from that. We had the same thing….they started with a laproscopic procedure first to check for any distant metastasis then go on with the surgery if none were found. They came out about 3 hours after I left pre-op to tell me they were proceeding with surgery (I found out later they proceeded because they couldn’t get through previous scar tissue and I am glad I didn’t know). His surgery was very long….13 almost 14 hours so I hope yours is shorter.One thing I might suggest for you (your husband really) is about the phone and texts. I had my cell and my husband’s. I felt like I spent all of my time texting people and fielding from people who wanted to know how it was going. I was very frustrated with it especially after I had told everyone that I would let them know as anything changed. I would suggest to delegate two or three people that you text/call and then do a phone tree from there. It will help limit the stress of that piece and be firm with those that feel they need to bypass the tree.
Then after surgery have your husband or someone be the “gatekeeper” for you. I told everyone no visitors for the first three days then kept it limited to family. Use the nurses if you have to have some be the “bad guy” about it. Keep it to what you feel you can do. And for at least a couple days you really won’t care who’s there.
Then once we got home. I did the same thing. Limited visitors. I texted everyone and said no one for the first 72 hours then they could only come if they called first and made sure it was okay. Those first few days home are crazy. Then when you feel up to it but keep it limited. I would tell people, sure come by for 15-20 minutes then politely ask them to leave.
Good luck and I am so excited for you! If i think of anything else I will let you know.
Keep us posted.KrisV
Hi Paul –
As everyone says welcome to the family of the roller coaster ride that is CC….and its not nearly as much fun as a roller coaster. Most of us would rather skip it.
I would echo what everyone else says…there should be a social worker at your oncology center or hospital that can assist you with most anything. The other thing you may try is Area Agency on Aging. They are usually for over the age of 60 in most areas but also for anyone deemed disabled and they can help you access resources. Local churches may have the ability to help even if you are not one of their congregation. You may also look and see if you have a chapter of LOVE INC (Love in the Name of Christ) and they are wonderful.
And don’t feel bad about asking friends and family to help out. I was very proud and didn’t want to ask for help after my husband was diagnosed but I finally had to….gas, hotels, meals and not working were getting overwhelming. One of my co-workers organised a fund raiser garage sale that brought in over a thousand dollars. You may see if someone in your family is willing to do that. The other thing is set up a GoFundMe account where people can just donate money to you.Hang in there and keep us posted.
KrisV
Willow –
Medicare doesn’t pay for the Home Care/custodial care which is the everyday stuff that people need….ie bathing, dressing, helping with meals and cleaning. Often times that is mostly what people need BUT Medicare pays for skilled care and in my opinion anyone with a disease like cancer, new diabetes, Heart failure needs to have a referral. Also anyone who recently had surgery (Major or minor) or anyone who has been see in the ER or hospitalized. A home health referral can help with medication management, symptom management, wound care, catheter care, drain care and without a doubt will help prevent hospitalization. They also supply physical, occupational and speech therapy as needed. Then as long as someone else like the nurse or therapist is in they will supply a bath aid a couple times a week and a social worker.
Medicare requires you to be homebound (not that you can’t leave the home but it is a taxing and difficult effort), have a skilled need (wound care, medication teaching, symptom management teaching and you have to have a doctor.Okay….off on the soap box again but I do believe that so many more could benefit from it.
KrisV
Mary –
My husband is in the middle of his last cycle of Gem/Ox and while not exactly the same drugs, similar in some ways. His first 6 or 7 treatments didn’t really bother him much other then the cold sensitivity from the Oxaliplatin. Now that we are hearing the end, he is fatigued a lot and has trouble with his memory and such but other than constipation he is doing really well.
Our ONC gives him really good pre-meds (steroid, Zofran and Ativan) and then meds after to take – Zofran/steroid twice a day for two days and Compazine every 6 hours. We follow the after directions exactly as given and have only had one episode of nausea.
I would think traveling would be okay. I would make sure you stop every couple of hours to get out and stretch to keep the blood flowing in the legs. Alcohol hand wash is a must….use it often and liberally especially anywhere you are around a lot of people. Drink lots of fluids and have fun.KrisV
Dianna –
To chemo or not to chemo is always a huge decision. I think most all of us have dealt with it at one time or another. My husband had a Roux-en-Y surgery which is similar to the Whipple but does not involve the pancreas at all. We had one positive node out of 7 and clear margins. Chemo was given to us as an option. We opted to go for it.
My husband is younger (50) but has diabetes and hypertension along with radiation from a previous cancer. It has not been a picnic dealing with the chemo…one of the side effects that can happens is “Chemo brain” and my husband has it pretty bad off and on. It’s similar to early stages of dementia…forgetfuless, illogical thinking, poor judgement and impulsiveness. Chemo can make the underlying dementia worse and then there are the concerns about other side effects such as the nausea/vomiting, weight loss and other problems.
I suspect you think the doc is “giving up” on your husband and I am not sure that is true. Choosing to opt for quality of live over quantity of life is just changing your goals…..comfort is the goal rather than cure.
I don’t know where your husband is in his dementia but if he is still able to make some decisions you may try putting it all out there for him and see what he says. He might surprise you.
But the bottom line is you do what you think it best. We can give input but you need to do what you need to do.KrisV
