kvolland

Dear Val –
Welcome to the family….the one no one really wants to be a part of but we are always here and ready to help if needed.
Sounds like things are going pretty good for you and that makes me very happy for you. Getting on a trial like that and having everything go pretty good is wonderful.
For your feet it sound like Hand-Foot syndrome, my husband had it so bad during his treatment with 5FU that he couldn’t walk. We used Eucerin cream rubbed in carefully like three times a day then used footwear that wouldn’t rub on his feet….diabetic socks and slip on moccasins. His feet burned like they were on fire or that he had gotten burned….they were red and hot to the touch to we would wrap them in cool wash clothes or soak for a little bit in cool water. Eventually it got better as his system got used to it.
Hope things continue to go good for you.

KrisV

Sandie –
Three and a half years sound good to me. And I completely understand that feeling. Continue to enjoy life and don’t let anything drag you down.

KrisV

Faisal –
I would think they would want the sepsis cleared up before they stent. Just coming from a medical stand point in that with sepsis you already know there is bacteria in the blood then do place a stent you risk getting that blood in places where you could abscess. Normally once someone is on systemic IV antibiotics for 72 hours the infectious part of the sepsis should be gone.
But stent placement should help slow down the infections related to the advancement of the cancer.

KrisV

Shaikha –
I do understand what you are going through. I lost my husband just a month ago. We had been married for 13 years. He was me best friend. Tears are so very normal. I have had many myself of the last couple of months. I am only 45, We are both too young.
My hsuabnd went so quickly from being healthy and fine to passing on that he did skip some of Lainy’s signs but as a nurse I can tell you most people follow them closely. I like the fact that he see!s to have his pain controlled. If he is not already taking oxygen you may have him start some…the docs can order it. As the fluid builds up in his tummy it can cause some shortness or breath. Don’t worry too much about the swelling in his legs while it is ugly it will not really harm him. You said his balls were swollen….just make sure he is passing urine. So!etimes that swelling can make passig urine difficult and he may need a catheter.
As Lainy said too You don’t know how strong you are until strong is your only choice. I have said that many times.

KrisV

Krassi –
You are such a wonderful sister and advocate. Your sister is very lucky to have you. I agree oxygen might help her feel a little better, especially if she has mets in the chest area. My husband had mets to the pleura around the lung and he ultimately was on a significant amount of oxygen. Air hunger can lead to a lot of anxiety…..if that seems to be the case then you may needs to ask for lorazepam (ativen) or haliperidol (Haldol). The ativan is a pretty basic anti-anxiety drug and can help greatly with anxiety related to any shortness of breath. Haldol is an stronget anti-psychotic medication that does help a lot with anxiety, extreme restlessness and in my husband’s case some terminal psychosis (he got a little crazy in the end). The Ativan and Haldol are standard “emergency” medications with the hospice I work with.
I am glad she is home. I know home is where she wants to be.

KrisV

Izabella –
The chemo may not be as bad as you are worried about. There are many, many people who do the Gem/Cis with very few side effects. Everyone is different and reacts differently. There are plenty of people who don’t have any issues. The neuropathy is something that they docs will monitor for and they can reduce the dose if he starts having issues. Eating well balanced meals and keeping his protein intake up will help.

As for just taking the liver out….we can’t live without it. Also they only like to do transplants on patients who have a good expectation of a long life. I know here it the US there are strict criteria for transplants that often include age as a factor. And the concern with transplants with cancer is that there may be metastasis that they don’t know about that will in turn attack the new liver. Then things are right back where they started. I know we are starting to see more living donor transplants….that is where a part of the liver is removed from a living donor who matches and is transplanted into the person who needs it. The liver will regenerate itself as long as there is at least a third of it to support the body while is regrows.

I know it is so unfair….and angering. I lost my husband a month ago to this cancer. Just less than 2 years after a supposedly successful resection surgery. He had a clear scan on February 9th then went to the hospital for a bleeding ulcer and they found some mets on the lining around his lung. He was finally rediagnosed with Stage 4 metastatic CC on April 27th and he passed on April 30th. He was only 51 years old….would have been 52 this year. So here I am a widow and I am not even 50.

I would go with the Gem/Cis and if it works well it might open up other avenues of treatment. The other thing you might look into is a biopsy and having the tissue sample sent in to Foundation One or another place that does the genetic mapping of the CC. There may be a mutation that is treatable with another chemo agent or you may be able to find a trial in Sweden or another country that is accepting members with that mutation.

Hang in there. Sometimes there really is a light at the end of the tunnel….it can just be hard to see.

KrisV

Sharon –

Is the tube stitched in place? Sometimes if they aren’t stitched in place then they can move around and then it causes a mechanical blockage meaning that it is up against something. If it stitched in place then it may very well still be related to positioning. Have his take a deep breath as you try to flush, lay down or even just lift his arms up. Sometimes that will take care of it. Also since he is obviously getting bile on his skin, make sure you keep the area well protected….I would apply some sort of barrier cream around the area…..using something that has dimethicone in it as it will repel the bile away from the skin. Keeping the dry dressing on it will help a lot too.

Stay in touch with the interventional radiology and keep them posted on how often it plugs….may need to be changed and have a bigger size put….yes I know a total pain in the rear but will keep it from plugging up.

I know how frustrating it can be. My husband had one put in 5 days before his resection. We were only home for two days before we had to make the trip to the hospital for it. In my husband’s case instead of draining a liter of fluid a day (which is normal), he drained 6 or 7 liters….we lost count…but he ended up really sick, dehydrated and in serious trouble. Then about 5 days after surgery they replaced it with a bigger drain because it got plugged. Then they turned around just before we went home and capped the darn thing. UGH!

Watch for the signs of infection and keep in touch with the interventional radiologist/

KrisV

Wow, my dear, you have been through quite a road with all this. I am sorry that you had all this happen to your family. This is one of those diseases that just takes its own path differently with every person.
I am not sure I understand why hospice would not deal with the catheters. Are you talking about the stents with external drainage or does he have another type of catheter. Hospice is supposed to provide for all palliative care….catheter and stents are usually part of the palliative process so I would argue with them….or see if you have another hospice agency in your area. Also if you husband is covered under Medicare….he is 66 so hopefully he is….they are pretty much required to. I would argue heartily about that.
Sounds like you have your hands full but please remember to take care of yourself too.

KrisV