1

(23 replies, posted in Introductions!)

Chrisna -
I can answer one question. There are internal stents that are used if needed to open a blockage in the bile system to allow it to drain properly. They can be metal or plastic. They are usually placed with an ERCP and at times they do clog so they need to be cleaned out or replaced, not usually daily though. Our GI doc said anywhere from every couple of weeks to several months. We opted not to do an internal stent due to the risk of infection that goes with them as Mark was already battling blood infections on a regular basis.
Externally you can have a bile drain which is what my husband had. He a PTBD placed - Percutaneous TransBiliary Drain. This placed a thin tube into the bile ducts upstream of the blockage. This allowed bile to drain to an external bag that needed to be emptied a couple times a day (normally). We weren't  normal and had complications when first placed but after surgery it worked fine and they pulled it a month after surgery. The idea of this is to take the pressure off the liver to allow it to work better. His bilirubin dropped from 13 to 8 in the 36 hours after placement.
If you go up to the search tab under the headings you can enter anything you want to search for and by going to advanced search you can narrow it down some. You could type en anything and read what comes up. It's usually a lot but sometimes there are buried gems in there. You can also search by names too. If someone sounds very similar to your friend's case then you can type in their name and read their story.
Hope this helps.

KrisV

2

(23 replies, posted in Introductions!)

Chrisna -
My husband too had surgery...almost a year ago now. We were told that we were the lucky ones and has been said, it's the only chance at a cure. There is a lot of debate about to do or not to do adjuvant chemo after the surgery. My husband chose not only chemo for 6 months but also 25 doses of radiation along with 5FU chemo. Our Onc felt it was the best shot at a long term remission or "cure".
Right now his quality of life is not all that great due to the effects of the chemoradiation but prior to that he was working full-time and you would not know he was or had been sick. And once he recovers from this recent round of stuff I suspect the same will be true.
Surgery is rough. His was 14 hours and he was 12 days in the hospital and he didn't return to work until September last year but he was working full time and feeling fine.
And just because surgery is recommended, it doesn't have to be done. I am sure there are those who chose not to, just as some don't do chemo or any other treatment.
Good luck with the 2nd opinion.

KrisV

Crissie - So sorry that your Dad is feeling that way. Anger I can understand. I spent a lot of time that way too.....so did Mark at times. As for feeling that they aren't listening to him, they may not be. Sometimes medical professionals get wound up in trying to "cure" everything that they forget to listen to the patient.
It may be time to sit down and discuss with your dad exactly what he wants. If they could make him feel better would he want to continue the chemo or is he done all the way around? If he wants to continue then I would make an appt with the doc/NP and sit down and explain what your concerns are (make a written list). You may have to get rude to get them to listen all the way through. Ask them to wait to answer until you are done. There are meds like Ritalin that can be used to increase energy or an anti-depressant or medications to increase appetite such as Megace. Ask if there are other medications for nausea (we used Zofran, prochlorperazine and Ativan but there are more).Then listen to what they say.
Your dad may still elect to have hospice and as Lainy said it's pretty easy to deal with the. And yes they will help with pain, nausea and any other needs he may have. Their goal is comfort so ANYTHING that will help with that they are up for.
Hang in there and keep us posted.

KrisV

Julie - You are right, the numbers do seem terribly negative. Our doctor pointed out that those numbers are looking backwards, not forwards and as treatments get better and better those numbers get better. He said five years from now we can look at those numbers again and see the improvement. I now don't think about them (well, I try) and when people ask (and they do) I tell them he doesn't have an expiration date so I have no idea. This has a tendency to be a glass half empty rather than half full kind of thing. Keep up the positive energy.

KrisV

Duke and Lisa -
Yes you should get up and move around. Cancer has a tendency to make the blood clot differently, making you at higher risk for blood clots. I usually tell my patients, at least hourly when they are awake. At least stand up and march in place to get the blood moving. And then if you are traveling - especially by plane or car - to move around every couple of hours. In a car take break and get out and walk around, check out the sites, have a bite to eat. In a plane you can walk up and down the aisle. There are studies that show increased clots in people after flying or driving long distance even if perfectly healthy.

I do it too....sit in one spot, especially at the computer for too long. Usually the cat reminds me that she needs attention by getting in front of the screen.

KrisV

6

(9 replies, posted in Good News / What's Working)

I want to shout it from the roof tops, run through Seattle screaming it out loud or do a happy dance all the way home but I know someone would think I was crazy and lock me up. I think after a year of this I am a little crazy though.

We are done. Getting two liters of fluids tonight just to make sure he is well hydrated and then the pump comes off and we are done! No more chemo, no more radiation and no more trips to Seattle for a little while. We don't have to be back until June for his one year follow-up (one year from surgery).

Blood counts were good including Ca 19-9 which has come back down since starting radiation when it popped up. He weights 190# fully dressed with his pump on so I suspect about 185 which is what he was at his lowest after surgery. He kind of looks like a scarecrow right now but that will change.

So darn happy. There are so many people who have helped make this happen including everyone on here for there wonderful support that has been given throughout all this. Thank you everyone for your support. Love you all.

KrisV

7

(9 replies, posted in Good News / What's Working)

Duke -
We were just talking about the "end of times" yesterday on our way to Seattle.....We had the first of the four blood moons Monday to Tuesday and there is a lot of talk about that being a sign too. My husband says that he didn't go through all this %^&% treatment to have the world end now. He says he will be really pissed.

Congrats on a good scan. Love to hear that.
Have a great Easter.

KrisV

I am sorry Lisa that you didn't get to ring the bell, if I had known at the time I would have rung for you. I would take the hugs too....we got hugs from all the staff...not Dr Yao though, she's not super hugable.

9

(10 replies, posted in General Discussion)

My husband's family is riddled with cancer....once of which is colon. I will always wonder if that is a link somehow. I look at where they lived for years.....downstream of an apple orchard which is now a golf course. I always wonder about the pesticides and what not that flowed in that creek. Mark is on his second cancer in his life time, his mother has had multiple primary cancers (lung, colon, uterine) and his grandfather died from prostate (aggressive form) with mets to the brain. They did say that his tumor was in the area of the original radiation from his Hodgkin's so that may play into it. So many factors, it would be nice if they could figure it out.

Then we look at my son and his thyroid cancer....there is NOT one risk factor for him to have it but yet he did. Now he had a greater risk of further cancer and his children now have a greater risk.


KrisV

10

(6 replies, posted in General Discussion)

Ah Lainy, you know it can never be easy....that's why we are all hear....we didn't get th easy path. I wish it was that easy....remember though, you know your body and you don't feel like anything is wrong so you are good.

Keep us posted.

KrisV

Congrats Lisa! Way to go. We were so happy to be done yesterday although I think I was happier than Mark. He's just so tired. But he did ring the bell when he was done.

Now get back to biking and hopefully things will be smooth sailing now.

KrisV

Leslie -
One approach you may try, using the link about that Gavin posted, scroll down toward the bottom, there is a spot for recruitment and it give the names and contact information for the two places they study is recruiting at (when it starts). There are email addresses for both, I would email them and see what conditions are needed.....may be able to answer some of your questions. Most studies on the www.clinical.gov site have some sort of contact information. I would think it would vary from study to study.
Hope that helps.

KrisV

13

(3 replies, posted in Introductions!)

Dear Leslie -
Welcome to the best family no one wants to be a part of. I am with Kris....breathe. You have come to the right place for assistance and support. I do not know much about trials since my husband has not needed to go that route yet but you will find plenty of people who are going to be helpful.
One thing to remember that this is such a rare disease that there is no "set" treatment for it....there are trends such a Gem and Cis or Ox. There are different radiation that can be used. And lots of other things that are being use. You may want to look at a second or third opinion. Sometimes what one doctor doesn't do, another will be willing to do.
Keep us posted and hopefully you will get your answers.

KrisV

14

(14 replies, posted in Chemotherapy)

Porter -
One thing our Onc said was that blood counts tend to be their lowest 7-10 days after treatment so that's the area where to be the most careful. I was pretty hard on the family about visiting. Everyone had to have a flu shot this year - including anyone that was planning on visits and then there was alcohol handwash everywhere in the house. Anyone that came in had to use it. We even had the little one due it too. I was pretty OCD about it and upset my oldest son at one point....he came over and was sick so I had him leave...he didn't think that was fair and I kind of chewed on him about not being fair to dad. I think he gets it now. We also avoided family gatherings and other places that could get him close to someone that was sick.
It worked out well. He only got sick once during the six months of treatment and it was a sinus infection that I am not sure we could have prevented.
Hope things work out for you with this.

KrisV

Like both of these. I am keeping track of these to share with my patients once I go back to work.

KrisV

16

(26 replies, posted in General Discussion)

WooHoo! Lisa so glad that you are almost done....and on the same day too. It's been a long haul for you.
They talked about holding Friday's dose and making it up next week. Were worried that he had too much radiation in one day with the x-ray and the CT scan....I asked if it really mattered and they said no and let us do it. No interferon though so that helped some.

He had three bouts of the sepsis last summer and it was horrible. Nice thing is he usually perks up with antibiotics.

17

(26 replies, posted in General Discussion)

Well, we are almost done but I think if we weren't so close, Mark would cry Uncle on it! We spent Friday morning in the ER. Woke up to 101.7 temp that would not respond to Tylenol so instead of infusion center for fluids, we were in the ER to rule on infection. Ugh! They initially thought he was septic...temp up, pulse up, BP down low (83/46). His white blood cells were only 2.7 on Wednesday so they were worried. After two liters of fluid, CT scan, blood work and x-ray, they found nothing but a possible sinus infection. Back on antibiotics then home after radiation treatment. He was upset because the chemo was going in the port so they had to start lines and do peripheral blood draws. Not fun. Two more radiation doses next week then off chemo on Wednesday and he is done.
This has been a definite rough go. I think if his first 6 months of chemo (Gemox) had been like this I bet he would have said no to this round of it. But we are almost done.

KrisV

18

(3 replies, posted in Chemotherapy)

Crissie -
I agree with Kris, don't put the cart before the horse. Everyone reacts differently to chemo. I would prepare for the cold sensitivity which seems to get to everyone at some point but again varies from person to person. Gloves, warm socks, warm drinks and sweaters seem to work best. Also have him be honest about any numbers or pins and needles that won't go away. My stubborn man wasn't honest and has some mild permanent neuropathy but he says he will live.
Hang in there. Remember we all react differently.

KrisV

Lola -
A lot of it depends on how much of a surgery they are doing, how long it will be and any other problems your mother might have ie, diabetes, heart disease, etc. My husband is only 50 but his surgery was 14 hours long and 12 days in the hospital.....extreme by anyone's standard but I was overwhelmed when he came home and I am a nurse. I would suggest that you maybe think about visiting nurses for at least a couple of weeks post-op just to help you dad out. Her insurance should cover it at 100% especially if she has Medicare. It just helps to have that second or third or fourth set of eyes.
Some people will fly through surgery and others will struggle. Definitely assess how things go but I would always opt for help if available.

KrisV

Julie -
You are the first person that I have heard refer to the type 1.5 diabetes. My husband has that and everyone looks at me like I ma crazy when I try to explain it....even some doctors. My husband had radiation as a teenager which hit his pancreas so he doesn't produce enough insulin and then he has the insulin resistance due to age and weight. Although at this point even though he lost weight, he's only been able to drop taking meds, not his insulin.

The steroids after the chemo did play with his blood sugars some. He popped up in the mornings from less than 130 to low 200's but usually after three days it returned to normal. I just made sure that he ate more protein right after chemo which helped some. His A1c has actually been better through all of this. It used to run 9-10 and now usually less than 8 although I suspect it is more related to 50# weight loss in the last year. His Lantus insulin has dropped form 50 units twice daily to 20-30 units twice daily (more if taking steroids) and then hardly using his sliding scale.

While your wounds are healing though, I do suggest that you increase your protein intake. Your body needs more while its healing so it can use the protein as building blocks. Stuff like Glucerna to supplement meals can help. Carnation Instant Breakfast is pretty good too and we found it in premixed bottles that he likes too.

Hugs, KrisV

21

(14 replies, posted in Chemotherapy)

Porter -
Yes the cold sensitivity is a type of neuropathy....it's an irritation of the nerves and the cold sensitivity is not a permanent type (or shouldn't be) and the true neuropathy in more permanent or at least long term.
Mark said the cold sensitivity was pins and needles, not numbness although I suspect it varies for everyone. He said that when he drank something cold or drank something to fast it was like drinking shards of glass. He also said a cold wind felt like he was being sand blasted. The cold sensitivity was bad for him from day 1, treatment 1.
Hopefully your doctor called you back and things are feeling better now.

KrisV

22

(5 replies, posted in General Discussion)

Julie -
Sounds like a pretty normal abdominal incision. They seem to do that a lot. Glad you worried for no reason....that's always the best type of worry because then it goes away smile

KrisV

23

(4 replies, posted in General Discussion)

I agree with Kris 100%, you need to make noise. I always say the squeaky wheel gets greased. Both the nurse practitioner and the doctor have bosses, usually an administrator of some sort and you may need to express your concerns to them.
There is no need to anyone to put up with rude doctors or other staff. Yes, they are there to help us but we are consumers just the same. We would not put up with this type of rude behavior from anyone else....your waiter/waitress, the hotel clerk, even the cashier at McDonald's, why should we put up with it from our doctors.
I would seriously look for another doc. We did this with Mark's radiation oncologist. The first one was just too negative.

Keep us posted.

KrisV

24

(11 replies, posted in Members' Cafe)

Thank you everyone. It turned out great and kind of happy that it is over with at the same time.

25

(14 replies, posted in Chemotherapy)

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