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More cancer for my friend

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51 Re: More cancer for my friend on 11/18/2018, 6:43 pm

To say, "Good luck tomorrow, Joani and friend," seems a pitiful understatement next to the enormity of the trip, but there you are. Will be thinking of you.

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52 Re: More cancer for my friend on 11/18/2018, 7:04 pm

Yes linda. Best wishes joani..!!

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53 Re: More cancer for my friend on 11/18/2018, 8:36 pm

Thank you... leaving at 6:30 am. My niece left this afternoon headed back to Atlanta with her family after dinner. She has some Monday surgeries and then will fly to Houston tomorrow night. She will fly back to Atlanta Wednesday night Thursday morning... forgot what she said.

We will stay at the Roark house (same name has my good friend Jimmy that we lost last year). After that we will probably move to an Air BnB whatever the hell that is... a 2 bedroom apartment.

Thank you for your good wishes it means a lot.

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54 Re: More cancer for my friend on 11/19/2018, 2:18 am

Forgot to ask whether or not you'd be in touch at some point if you had to stay in Houston for long....I guess we'll find out. Obviously the forum will NOT be high priority. Understood! Will wait to hear whenever that is.

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55 Re: More cancer for my friend on 11/19/2018, 10:30 am

safe traveling.

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56 Re: More cancer for my friend on 11/20/2018, 5:02 pm

Arrived last night at 7pm. We left Gulf Breeze at 7am. Stuck in Louisiana on the interstate for almost 2 1/2 hours. My friend was tired and has been very week since the SOB, heart rate and blood clot. Her daughter got in at 11:30pm. Long day for her.

They are seeing the Gastro physician now. From here we go for labs and scans then see the physician tomorrow for recommendations. Hopefully home on Thursday.

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57 Re: More cancer for my friend on 11/20/2018, 5:48 pm

Wow. That sounds amazingly hard. I really hope that there's a good plan found. Take care of yourself too.

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58 Re: More cancer for my friend on 11/20/2018, 8:10 pm

Never a more appropriate thanksgiving week.

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59 Re: More cancer for my friend on 11/21/2018, 3:37 am

What Pkr said, Joani.

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60 Re: More cancer for my friend on 11/22/2018, 5:31 pm

Leaving in the morning. The treatment outlined by the oncologist at home is the same treatment recommended by MD A. MD A, however, would not be able to do the K-Truda unless she was on chemo for 6 months with no success and she would have to be here weekly. Dr. Eldaway has been in constant touch with my niece and the MD docs here.

Now, we ran into several red herrings that were figured out here. The shortness of breath was worked up at GB ER and a blood clot was found. She was transportated to SHH but the O2 sats were 99% on room air, doesn’t fit with a blood clot. So the did a cardiac work up and determined the rapid heart rate and BP elevation was responsible. No..it wasn’t.

She saw the physician here then had labs and abdominal scans to evaluate the tumor. As the physician the next day. She sent us to the ER for an evaluation and work up. Because my friend had had a gastric by pass years ago, her anatomy is different, which we knew. The problem was the old stomach was collecting excess fluid from the pancreas and bile duct, secondary to the tumor enlargement. She was admitted and referred to Interventional Radiology to have a gastric tube inserted. They removed almost 3 liters of fluid. Relieving her pain and SOB. We were discharged today and will leave the hotel in th am. MD Anderson will follow every 2 months in Houston.

The plan is to have interventional radiologist at SHH attempt to insert another tube into the jejuenum... passing the tumor. They tried for over an hour last night but could not get it in. Dr. Eldaway has already ordered her meds and will begin trying to shrink the tumor and hopefully get another tube in.

Is the treatment better in Houston... SHH and her oncologist and oncology surgeon were right in their plan and it was confirmed by Houston. The major problem addressed here was the need for draining her stomach. We never had a repeat abdominal Scan considering she just had one 2 weeks before.

The tumor is active and a little larger, hence the blockage. The tumor is not in the vena cava as I said earlier, I was mistaken...the tumor is compressing the vena cava. Shrinking the tumor with the immuno therapy and then surgical removal is the goal.

I am tired. The hotel is connected via a skywalk but I walk about a 1/2 to one mile going into the hospital and back, ugh. Thankful for my new knee.

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61 Re: More cancer for my friend on 11/22/2018, 6:20 pm

Wow Joani, thanks for the very interesting and enlightening report.  I followed every word and have a few questions, if you don't mind, on things I wasn't clear about:

You said that GBH "found" a blood clot (in her lung), but was it definitely there, even though the room air Ox reading didn't compute?  Any way to know for sure?

Am also wondering why/how the first drainage tube attempt at MDA was apparently successful but not the second - and why was a second needed so soon anyway?

Also, you mentioned the restrictions on Keytruda at MDA.  You saying her oncologist here is not thus restricted from providing it prior to or in lieu of chemo?

I could probably ask more but will shut up now, other than to say the plan to shrink (via Keytruda, then?) and then remove the tumor sounds good, and I hope everything works.  

Also hope you can get some good rest upon arrival back home.   Is your friend feeling any better now that she's had all this additional professional advice?  Certainly the drainage thing seems a huge help, and I guess it just goes to show GBH that they should've done another abdominal scan or read the last one better, yes?  Hopefully they'll learn from the MDA reports.

Meanwhile, I hesitate to report that I have a bit of a cancer scare going on myself.  Annual mammogram this week was abnormal, showing amorphous calcifications possibly due to scarring from the prior lumpectomy, but bearing checking out via stereotactic biopsy, scheduled week after next.  Naturally this little cloud put a bit of a crimp in our Thanksgiving enjoyment, but am trying to think positive, despite the fact that if this is indeed a recurrence in the same breast, my options will be severely limited this time.  Worried but not freaking out.  Yet.   Ha.  And yes, of course I'll come back to advise results, hopefully with bells on.

Safe travels home!

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62 Re: More cancer for my friend on 11/22/2018, 7:00 pm

The blood clot was definitely there and she is on blood thinners to dissolve the clot. However, it was in a location they were not concerned about causing life threatening damage.

My niece and the radiologist discussed a Jejunum tube. He agreed she would need it but he could not pass the tumor. The gastric tube only causes a lot of lost electrolytes. The J-G tube would connect and facilitate absorption. She will need fluid replacement with just the G tube.

Because of the Lynch Syndrome clinical trials MD has to start with chemo and wait for a failure. Yuk.

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63 Re: More cancer for my friend on 11/22/2018, 7:16 pm

Joanimaroni wrote:Because of the Lynch Syndrome clinical trials MD has to start with chemo and wait for a failure. Yuk.

Yuk is right, but what about here, locally? Are they similarly constrained or can they go ahead and prescribe Keytruda? Sorry I'm still not clear.

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64 Re: More cancer for my friend on 11/22/2018, 7:56 pm

Dr. Eldaway spoke with the oncologist at MD Anderson on Wednesday and ordered the medicine for her to start Monday or Tuesday. The K-Truda... which was his first choice.

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65 Re: More cancer for my friend on 11/22/2018, 8:23 pm

Dr. Eldaway was approved by the FDA to administer K-Truda to the sister...but she did’nt live long enough to get it. So he got approval ffrom FDA for my friend.

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66 Re: More cancer for my friend on 11/22/2018, 8:25 pm

Great!!

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67 Re: More cancer for my friend on 11/22/2018, 9:20 pm

Joanimaroni wrote:
I am tired. The hotel is connected via a skywalk but I walk about a 1/2 to one mile going into the hospital and back, ugh. Thankful for my new knee.


A lot of the hotels around the area have a shuttle that runs every hour & drops you right at the front door to MD Anderson.

I've stayed at MainStay suites on Old Spanish Trail a couple of times and they are very conscientious about their shuttle.   Maybe not the fanciest place …. but clean, quiet, and easy on the wallet.

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68 Re: More cancer for my friend on 11/23/2018, 1:16 am

I either miss read or saw a typo...we are staying at Rotary House not Roark House.

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69 Re: More cancer for my friend on 11/23/2018, 9:45 am

Wow... herculean effort joani. I'm glad that she was able to get this work up.

I'm so sorry to hear of your troubles now linda. I hope that it's not what you fear.

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70 Re: More cancer for my friend on 11/23/2018, 3:28 pm

Thank you, Pkr.

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71 Re: More cancer for my friend on 11/24/2018, 1:15 pm

Good trip home. Left Houston 9:30 am. We had a leisure lunch stop at Cracker Barrel and stop a couple of times so I could hook up her drainage bag. Arrived home 7pm.

Linda you are in my thoughts regarding your biopsy. Stay positive, many many times just calcification around previous spot.

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72 Re: More cancer for my friend on 11/24/2018, 3:25 pm

Glad you're home safe and sound, Joani. You did a very fine thing for your friend.

Thanks also for your encouragement. I'll hold onto that.

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73 Re: More cancer for my friend on 11/24/2018, 4:18 pm

We are scheduled to go back to Houston the end of February.

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74 Re: More cancer for my friend on 11/24/2018, 6:30 pm

Joanimaroni wrote:We are scheduled to go back to Houston the end of February.

Better than once a week, but still no fun at all, I'm sure -- even with a stop at Cracker Barrel!

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75 Re: More cancer for my friend on 11/24/2018, 8:56 pm

Worried but not freaking out.

The right attitude. You just deal with the cards as they come out of the shoe. It sure seems this cancer thing which we were told about all the advances is still one bad hombre. I am so happy that Joan was there for her friend.....she will never know the comfort she gave. Enjoy today, fight for the next day, and understand that there will be a last day which none of us have a thing to say.

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