mlepp0416

Byron:

My husband Tom just started on Chemo again, this time rather than Gem/Cis he is on 5-FU ‘push’ where they push a good amount of the chemo in 1/2 way into his two hour infusion of medication to protect his kidneys. The ‘push’ is over a time frame of 10 minutes.

Two days later he was feeling the effects and was pretty tired…today 4 days later he is experiencing all the same symptoms as you. Feels tired, nausea, flu like type symptoms, body aches, etc.

He has a call into his doc and they’ll probably have him come in for blood counts as his ‘nadiar’ score may be getting low and he may need a blood transfusion. He needed a few of those when he was on Gem/Cis as well.

Does your oncologist want to know anything unusual happening with you? Like sores in the mouth, fever over 100, sore muscles, vomiting, nausea, tiredness, etc. like they do with Tom?

I say just get on that Mustang and ride it for all it’s worth! Go with God and KEEP KICKIN’ THAT cancer.

Prayers coming your way from Wisconsin.

Margaret

Michael, I’m so sorry, I just realized that I called you ‘Adam’ on my last post…must have been tired with all that is happening here on this end! I hope they find out quickly what the issue is with those drains, cause that should not be happening!

Please keep us all posted!

Margaret

Michael:

Hi, this is Margaret and I’m considered by many to be the ‘tube’ expert. My husband Tom has had an external drain tube to control his high bilirubin levels since December ’09, and previous to that he had a JP drain and an extra drain because he’d developed a pocket of bile behind his liver (which was infected) and his liver was leaking bile from the cut side of the liver after his resection.

What I’ve learned during this course is:
1) Flush the drain one time per day with a 10ml 0.9% Sodium Chlorie flush

The way I do this is put gloves on(vinyl exam gloves) to uncap the drain, swab it with an alcohol swab, get the air out of the flush and attach the flush to the drain, and slowly push the solution into the drain tube. Then I take the flush off and toss it and let the liquid (flush and bile) drain onto some kleenix. I swab the cap with an alcohol swab to ensure it is clean. Then swab the end of the drain and put the cap back on.

2) Take off the old bandage and the old gauze pads. I then use a Band Aid Antiseptic Wash on a Q-tip and clean the site where the tube enters the body. It sometimes take 2 -3 Q-tips to ensure that the site (hole) where the tube enters the body is clean. Then I hold a kleenix against Tom’s side and squirt the entire area including the hole with the antiseptic wash and the blue part of the tube as well. With the same kleenix I then wipe down the entire area.

3) Rebandage the site. I use 4×4 gauze pads. There are two in a package. I take one and fold it in half, then fold it into thirds. I place that under the tube and position the tube where I want it to lay. I take the other gauze pad and fold that in half, then fold one end over to cover the top of the wound and partially cover the other folded gauze (so none of the wound is showing. Tom holds it in place with one finger. Then I open a Tegaderm Film (made by 3m) 4×4 3/4 inch size and place that over the bandage.

The nice thing about the tegaderm film is that the skin does not break down at all. It is easy to apply once you get the hang of it. Tom can shower and his bandage does not get wet. The film does not make his skin sore at all. We have been using the Tegaderm film on his site for almost two years now.

This is my routine on a daily basis and he has had very few infections since I started this process. One month after a tube exchange his doctor said “No need to flush it every day, you can switch to every other day. I did that an within 2 weeks he was in the hospital with a severe infection in the liver and had to have an emergency tube exchange and spent 4 weeks on antibotics. Now I’ve gone back to the every day flush and change and so far (knock on wood) no infections! And the doc’s and nurses are AMAZED at how healthy the skin is around the site. Bile, as you may know is very tough on the skin and can cause it to break down rapidly.

Tom has a size 12 tube and his doctor modifies it by adding extra holes so that the bile has more places to get into the tube. Without that modification it tends to plug up very quickly. The reason for the daily flushing is to keep those holes open so that the bile does not fill the holes and block them.

Tom’s bilirubin levels at his highest point was 26,900, most recently he’s been at about 4,000 to 6,000 but it took a jump up to 10,500 at his last blood work. His color is still looking good and he’s NEVER had any itching with his bilirubin levels so he is one of the lucky ones. His Alk Phosphatase was 867 and one of the chemo nurses was concerned until I told her that for the past year that number was around 958 and prior to his surgery it was as high as 1958, so the 867 was actually pretty good for him!

Things that can cause the bili level to go up. A recent tube exchange, the tube being plugged or not in the correct position, an infection in the liver, any kind of cold,flu, etc other than the normal way you feel.

If your doc is not having you flush the tube, I think this is something that you should discuss! You can also ask him/her to add extra holes in the tube like my hubby’s doc does. And also they can switch to a size 12 tube (which is what Tom has had for the past 2 years as the smaller ones just plugged up right away) And since his doc has started adding more holes, it’s been great. We also started watching the time frame between tube exchanges. Anyone with a long term tube going into their body is prone to infections and they can be nasty ones and the infection can kill you quicker than the cancer!

At first they were doing tube exchanges only when he got an infection. Then I talked to his team of doctors and said I wanted to try doing the tube exchange BEFORE he got an infection, so they scheduled them every 2 months. He still got an infection. So I talked them into every 6 weeks and he still got an infection…so after much prodding from my end we went to a every 4 week cycle and since they started doing that he has only had one infection – so now he is on the schedule every 4 weeks for a tube exchange.

I hope this information is helpful to you. Feel free to ask any other questions and if I can assist I will be happy to share my knowledge with you!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Dear Hopeful Daughter:

Keep oh believing! My husband Tom was told in Nov. ’09 that he had ‘possibly’ 6 months to live, that radiation and chemo would not help, just go home and get your affairs in order. I did not like those words and did not listen! Instead I put on my boxing gloves and went to find other doc’s who would maybe give us a little bit of hope. Of the three other oncologists we saw, the all agreed that the new tumor was inoperable, but they disagreed with the first oncologist and said that radiation and/or chemo ‘COULD’ help. After 28 rounds of radiation and then oral chemo – then iv chemo, Tom is still here and in a few days it will be two years since that oncologist said there was nothing that could be done.

Just goes to show that 2nd and 3rd opinoins are well worth seeking and that is why we firmly believe that they are necessary! If we would have listened to that oncologist, I know that Tom would have certainly passed on well within that 6 months. His bilirubin was over the top at that time, about 25,900 and currently is being maintained at between 6,000 – 8,000 with an external drain.

Tom was 61 when he was diagnosed and will be turning 64 this coming Feburary. So in total since his diagnosis he has underwent a major surgery where they removed 75% of his liver (a resection not a whipple) and for 18 months we had a ‘normal’ life….until he started turning yellow. But we have had a lot of firsts during that time as well. We had two new grandsons. One of which was named after his Papa and is the apple of Papa’s eye (and Grandma’s too!). Tom united with his first born daughter and she and her husband and their two children are now a part of our lives. We have another grandchild on the way, due in early April.

Tom was jus told that the cancer may have spread to his right lung as there is a hot spot that was not there on the last scan. But we are NOT giving up. Tom plans to still be here for a long time to come and says he is not going anywhere!

STAY POSITIVE and get your mom to other doctors to see what they think!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Ken:

Welcome to the site and to your new family of CC friends and CC caregivers. Please feel free to ask any questions and we will be there with some type of response.

My husband Tom had a successful resection in June ’08 and in Nov ’09 presented with a new inoperable tumor. He did not have chemo or radiation after the resection. His docs that he has now all state that he should have had chemo after the resection. I only wished that I had pushed for chemo, rather than listen to the docs.

Tom (my husband) was given 6 months to live in Nov. ’09 but after 2nd, 3rd and 4th opinoins he underwent 28 rounds of radiation and oral chemo, then about 5 rounds of IV chemo (Gem/Cisplation) and he is still here with me just abut 2 years later.

Words of advice, never take no for an answer, make those docs ‘think outside the box’ ask what else can be tried. ensure that the docs you are working with have a good knowledge of CC. Stay positive! Take it one day at a time and enjoy your good days – on bad days sleep, rest, watch TV, read and just take it easy, tomorrow is another day and may be better! Surround yourself by your loved one and make those memories precious for both you and them.

Hugs and Go with God and KEEP KICKIN’ THAT cancer.

Margaret