kathyb
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Hi,
I have an inoperable tumor (too large for liver transplant). I did have radiation and chemo at Mayo in Rochester last fall. It did stop growth. They tell me I have too great a risk for infection to do other procedures so chemo is now my only option, too. Haven’t started that yet as it needs to be correlated with my next stent replacement.
Please tell us more about your diagnosis. I haven’t been on this site long, but here you will find very caring people with first hand knowledge, going through the same things you are.
Kathy
There are permanent stents. I only agreed to the metal stent wrapped in plastic because it wasn’t permanent, suppose to have twice the life before replacement (6 months) and had previously heard there are “problems with permanent stents”.
I am a novice at all this and do not claim to have much knowledge. I’m sure every kind of stent can have problems. It seems the doctors don’t know as many answers as we would like them to, since we are such a minority.
Gavin,
I honestly do not know. I looked at the Mayo report to my local doctor. It says, ” A covered expandable metal stent”. “A Viabil 8-mm internal diameter x 4cm long fully covered stent.”
Kathy
Hi Bill,
I read my post and I was partially wrong about the stent type. I make so many mistakes these days. Sorry. It was a self-expandable metallic stent wrapped in plastic (not the other way around). The wrapped in plastic part part is what makes it removable, I think. I was told it should last six months instead of the 3 months for the plastic stents, and it is suppose to be removable. The Mayo Clinic in Rochester did the procedure. I tried to find something about it on their web site, but couldn’t. It may be rather new.
Hope this helps.Kathy
Hi Bob,
There will be many people here who will respond and be very helpful. I’m rather new to the site myself, but feel most comfortable here. They are a wonderful group of people.
I am very thankful I am able to go to the Mayo Clinic in Rochester.
Kathy
Harmony,
It’s wonderful to surprise the doctors, and what a job you have done!
Please explain to me these 3 cycle rounds. My doc said I would have 8 3-cycle rounds. Day 1, day 8 and a week off. Sounded ok to me until I thought wait a minute, there’s actually a week off between day 1 and day 8… that means it’s really once a week. Sounds like you have it on day 1, day 8 and then day 16?
Also, is the port in your chest? How do you feel about that? I’m such a wimp about hospital/doctor things (have always been very healthy), but I do much better when things don’t come as a surprise to me.
Kathy
Harm,
Thank you so much for posting! I have an inoperable tumor the size yours was. Went through 24/7 chemo and radiation last fall which made it stop growing, but didn’t shrink it. Now I’m debating when to start Gemzar/Cisplatin. I thought my oncologist said it would be easier chemo than before, but I’m not so sure about that after reading more about it. Was your chemo every week? Mine is to be every week for around 6 months! What were your side effects? I think I do better if I’m more prepared. Did you have a picc line or port? I’m feeling great and would not know anything was wrong these days if I didn’t have this diagnosis.
Thanks again for posting. I know chemo doesn’t work for everyone, but it just might for me if it did for you :o)
Kathy
Bill,
If you don’t mind sharing, what are your reasons for not doing chemo? Also, how do you know for sure when your stent is partially blocked – total billirubin count? My stents have always been changed before they get blocked.
Thanks,
KathyBill,
Thank you for sharing your journey.
I was diagnosed in July 09 at almost 60, have an inoperable tumor too large for liver transplant or PDT, have had radiation and chemo which stabilized growth so far, 4 stent placements (the last one was plastic wrapped in metal which should last 6 months), 2 bacterial blood infections, considering going on chemo again even though I’m feeling great, have a strong faith in God, and feel very blessed to be able to go to the Mayo Clinic.
By the way, I love my liver. It’s been good to me, too! Half of it has been destroyed by the tumor, but it seems livers have a way of rejuvenating and carrying on. It seems like a miracle of creation to me.
Hoping to hear more from you and how you are doing.
Kathy
I applied last August for social security disability and was approved very quickly (in two – three weeks I think). There’s a waiting period before you get your first check. It’s five or six months, can’t remember. Is this chemo brain?
Kathy
Nothing worked for me during my last chemo. Nausea was almost constant. I’ve never heard of a marijuana pill. Is this legal in the US or are you in another country?
Kathy
Marion,
Was the picc line or port in the chest able to be taken out? Or can it be? I’m just trying to prepare myself for what’s coming.
Kathy
Thank you all for responding. It helps so much to gather other peoples’ thoughts. And Ron, please continue posting. I can’t even find your post right now, but hopefully it’s my “chemo brain” not working. I cherish all your posts.
Kathy
Another question: Not having much knowledge on this, I thought a PICC line was in the arm and a port was in the chest. Is that wrong? Can a port be taken out like a PICC line. I had a PICC line last fall for 24/7 chemo and was very glad when it was taken out.
