whatnow
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Pattic
Your husband and my diagnosis is about the same time. I was wondering if he has had any probem with low platelets after chemo? I’ll have another biopsy March 1st, then Y 90. It’s much more promising than just hearing there is nothing that can be done.
Janet in Phoenix
I’m going in for an appointment with Dr.Lanauze at MDAnderson next Monday about embolization and a spleen embolization. Haven’t heard much about the spleen embolization. I’ll ask about xeloda. They’re also doing another biopsy for the genetic information.
Janet
Native GF
Funny you should mention feeling bloated after eating. This happens to me, but I thought it was just because I ate way too much. I feel guilty that I still enjoy food so much (I said long ago that even if I got cancer I would not lose weight). I am so hungry in the morning I have to make myself stop shoveling food in my mouth, otherwise I just feel so uncomfortable for hours. Guess I should mention this to my ONC. Thanks for bringing it up.
I was diagnosed with CC July 2016. Am on Gemz/cis chemo 7th cycle ( 14th treatment I guess). I went from 107 platelet count to 37K last Thursday. In one week week! Have had blood transfusion, venofer drip (anemia) and aranesp shot (anemia), And still platelets dropped to 37K. I’ll find out more next Thursday I guess.
There is so much to learn about this–very confusing. I’ll ask my ONC about bloating and gt back with ya.
Janet in Phoenix
Stephanie
I was diagnosed July 2016 too. And it was from a lung CT having nothing to do with my liver, they just happened to find it. I have the same thing and I’m at MDAnderson in Phoenix. It’s the red-headed stepchild of the one in Houston I guess.
This blog has helped me hold my head together and I’m sure it will be a wealth of information for you especially if you’re better on the computer than I.
Janet (whatnow)
Hi. I need some direction on how and where to post and then how to go back and see if there is a reply. I just received my youngest granddaughters iphone so I’m also trying to figure that out. Thankfully, I have many helpful grandchildren. They laugh when hearing how happy I was at their age to get a princess phone with a 25 foot cord to take into my bedroom for a little privacy. Times have changed and it’s going to take some time to play catch up with technology (if that’s even possible).
Here’s my question. Last week 1/4/17 my platelets were 107K and I had CHEMO (7th cycle). Then this week 1/12/17 they were 37K. So no chemo and I go back next week. How do platelets drop so far in such a short time? All I get from onc is that we’ll take another blood draw next week. I don’t feel any different.
I’ve looked online and it talks about internal bleeding and bone cancer so I’m not getting much there.
I’m on 2nd leg of 7th round of chemo gem/cis and was told there are no “bags of platelets” that they can give. I’m confused.
Janet
This is a very interesting post. I had my first transfusion last week, the week before had iron because platelets went down to 63K (bummer). Now waiting for Wednesday blood draw (waiting IS the worse part of this). The week before I was hit in the spleen and at that time platelets were 80K (ok for chemo) but had pain in lower back and arms so instead of getting chemo doc sent me to Hospital since I’m at risk of heart problems (comes from my dads side). I don’t know if being hit in the spleen can cause platelets to drop, doc didn’t say much.
Tumors were shrinking, only two more rounds of chemo then another PET scan and possible embolization. Originally was told I wasn’t candidate for radiation or surgery so everything was going great and then BANG, all goes straight to you know where. I guess that’s par for the course.
At Banner Gateway Hospital I mentioned that I had a port (was told they all had port training) so why were they putting in an IV but was told that ports are only for putting things in not taking draws. If they didn’t know this, I certainly didn’t want them to mess with it. Have lots of bruises now. But good thing is they’re clearing up. And, I now know my blood type.
Janet
Hi
Power port was the best thing I’ve had done since being diagnosed July 2016. Had it put in under “la la” drug in hospital. Doesn’t hurt to access each Chemo visit other than having to TPA (like draino for clogged port) after the week off Chemo (gem/cis). Sounds strange, but not a big deal.I agree with Marion–drink lots of fluids, especially water. I had mets in lungs and lymph nodes above kidney but guess they are gone as of last PET scan. Need 3 more gem/cis treatments and can get embolization. Hoping for a resection some day in the future. That they are already talking yo Kathy about resection is a good sign I think. I’m new to all of this too
I’m going to tell Onc this week that I want to talk to radiologist and surgeon (said I would not qualify before). I’m not changing a thing about my life until It’s absolutely necessary.
I’m sure you both will get through this and learn lots. That’s what life is all about.
Janet
Jeans post would be great in survivor section. I always look at that section and it stays at four. Not very comforting., although I love, love love the stories. Just saying
Catherine
Thanks so much. That it may have to be done a couple of times for success is good to know going in. Did they go in through the groin or some other place?
Thinking of your mom and her continued good health.
Janet
Diagnosed July 15, 2016 with cc. Currently on round 4 of gem/cis Chemo. Last week PET scan shows tumor shrinkage (the CA19-9 was correct) and no mets in other organs (had in lungs and adrenal above kidney) so going to do beads in the belly (embolization) after another 4 rounds of Chemo.
At least I feel there is some promising progress. I will read articles above since there are so many different embolization processes. Any info is welcome, especially personal experience.
In my research I’ve read that Medicare does not pay for ablation. Not that doc has said anything about this being an option, but I’m always looking to the future. Anyone now about this?
I hate watching buzzards circle my home thinking “not now, not today”
Irritated feeling so good and yet thinking about this damn stuff all the time. Like, when is the other shoe going to drop.
Tired of waiting for lab tests (CA 19-9 shows shrinkage, but wait that’s for pancreas, it didn’t light up in PET scan so it doesn’t mean anything). And waiting for next PET scan.
Annoyed with myself for not asking how many CC patients are in a large facility like MDAnderson in Phoenix (I’ve yet to meet one) This will be my first question when I go back for round four of chemo.
Devastated when I realized that the medical profession doesn’t have a clue what’s gong on with CC and it’s all a crap shoot.
Wondering whether I can eat some things with sugar or not.
Blessed that I have someone to drive me to Chemo and go to classes for cooking, pottery and such. Thankful for supportive kids and grandkids. (You’re gonna kick cancers ass!)
Yep, this did help!
Your mom probably heard the horror stories from 30 years ago. My mom did and absolutely refused to do chemo but that was over 20 years ago.
I’ve chosen to fight and this is what my kids want. After second cycle of chemo I still feel the same as before. I know they had hydration with steroids, then nausea bag followed by gemz last the cis along with more hydration.
I know I’ve only been through 2 rounds and 1 of the 3rd, but whatever happens I say bring it on. And it did help having my kids tell me what they wanted.
Get the power port. So nice. Had it done in hospital under twilight sleep. Easy peesy.
This is just my opinion. It is up to your mom, but your opinion should also be known. You can always stop, so why not try.
