Update On Keith Rodney (Boston67

Boston67

Greetings,

Tomorrow begins the next phase of Dana Farber and my fight against EC, phase IV.

I am at home following a sucessful J Tube implant into my Duendum. It was a must more significant procedure then I was expecting. The operation was on Thursday and I was discharged to home on Tuesday. I believe the procedure went well and it added information for my surgeon, Dr Joon at Dada Farber/Brigham and woman's hospital.

For now, I get 100% of my nutrition needs from the tube, per my surgeon, Dr Joon. He tells me that they may adjust this over time and that antyhing I take by mouth is a bonus.

The feeding consists of 7 cans a day of Jevity 1.2. It is begin fed to me at the rate of 70 ml per hour. My goal is about 2150 calories and 93 grams of protein. The feeding regime is just slightly higher then then.

I keep a log of all feeding tube activity and record the date and time of all canc added, when a new bag and tube is added (must every 24 hours, and the date and time of all flushing (every 6 hours. I am being careful to follow their instructions precisely and regularly.

My Surgeon has instructed me not to add medications through the tube to prvent blockabe.

This surgeon is now only the second person to actually see the cancer since he opened up my belly. He said to me that he saw and touched some ares uncobered and took at least one new biopsy, which he said was positive for cancer. Since my belly cavity and stomach are near the surgical sites, his primary worry is to assure that he has good healing before they start Chemotherapy. My Oncology doctor, Dr Ng, has said that there is a natural diffanece in their views since the surgeon fears infection before Chemotherapy and the Oncologist was to start Chemo as soon as possible. I believe that they will deciede together on the state date for Chemo.

In addition a second CT scan was performed which can and has been compared to the first one. The comparison shows some growth of the tumor but was told it was not dramatic.

My visiting nurse saw me and reviewed my feeding the night I came home (Tusday), stopped again on Wednesday and Friday and will return again nest Wednesday. This is a great help to me and helps calm my fears and my busy mind.

At the meeting Monday I will focus of the treatment, side effects and steps to minimize, nitrition and mental health. My family, as always, will; be with me with my sister and daughter as my advisers, my girlfriend for love and support and my other sister who takes detailed notes and reports to the entire family. We will all meet after we meet with the doctors to assure that we all have the same perspective on the meeting

I meet with my Oncologist on Monday and I think that is when I hear the specific datails of the treatment include dosages and timing. I have a preliminary estimate of the week of January 31.

I am in good spirits and my "hope" scale is very high, which my "worst" thinkingas prepared for as I know how.

My pain management plan has been adjusted somewhat after the procedure and consists of 15 to 20 MG of Ocycodone every four hours, 30 mg of Tylenol every 6 hours, and a Fentaryl 72 hour patch from which I get 25 mcg over the 72 hours. I expect this to be adjusted following Monday's meeting, but my pain can only be described as managed presently.

My digestive system was not working properly before the procedure and might best be described as constipated and a little blocked with infrequent bowl movement. Since being home and on the Jervity 1.2 it has become loose and generally regular. I have suspended the stool softeners (It's plenty soft) and Senna since a laxative is not needed. I have plenty of gas and movement. I know it is icky, but the digestive system seems pretty important to what I am going through.

Keith Rodney
Boston 67 Age 67 Boston
Stage IV (probably at least IVa)
Preparing for treatment

Donna70

glad to hear from you
Hi Keith,
It is good to hear that you are doing so well and the drs are working together planning your next step. Also, what a wonderful supportive family and that is so helpful in your fight and your mental state. They sound like they are on board with your fighting this EC. I don't know if you can swallow this but someone mentioned I did avocados but it was not avocados, it was creamy peanut butter. I have gone from 114 in May to 134 with the help of many jars of peanut butter that I was lucky enough to swallow. Sounds like you are getting optimum nutrition thru the tube. If you drink by mouth watch out for the amounts, I had coffee come right out of my side after I drank a half a cup too quickly. Glad they have given you a visiting nurse, they are invaluable with simple solutions. You will continue to be in my prayers and hoping that the target date of 1/31 is the one they stick with. take care,
Donna70

unclaw2002

Good luck. What chemo
Good luck. What chemo regime are they going to do?

Best Cindy

Unknown

This comment has been removed by the Moderator

Boston67

Donna70 said:

glad to hear from you
Hi Keith,
It is good to hear that you are doing so well and the drs are working together planning your next step. Also, what a wonderful supportive family and that is so helpful in your fight and your mental state. They sound like they are on board with your fighting this EC. I don't know if you can swallow this but someone mentioned I did avocados but it was not avocados, it was creamy peanut butter. I have gone from 114 in May to 134 with the help of many jars of peanut butter that I was lucky enough to swallow. Sounds like you are getting optimum nutrition thru the tube. If you drink by mouth watch out for the amounts, I had coffee come right out of my side after I drank a half a cup too quickly. Glad they have given you a visiting nurse, they are invaluable with simple solutions. You will continue to be in my prayers and hoping that the target date of 1/31 is the one they stick with. take care,
Donna70

Good Thinking
Thanks for the heads up about quantity into my stomach when I have a J Tube.

Keith

Boston67

unclaw2002 said:

Good luck. What chemo
Good luck. What chemo regime are they going to do?

Best Cindy

Don't Know
Hi,

I will know more definatively tomorrow. We discussed two weeks ago, but I forgot the details. I do recall that it is a three chemical cocktail administered at Dana Farber on Day one and then the other two added for day two and three by take home pump. Then a return again in two weeks to do again. For a total of four such cycles.

The chemicals mentioned were: Trastuzumab, Olaxiplatin, fluorouracil, and Leucovorin. Yes I count four also. It may be that Trastuzumab is day one, and the others (with Trastuzumab) by pump on day two and three.

I do not know the dosages.

Keith

Boston67

unknown said:

This comment has been removed by the Moderator

Thank you
Hi,

My set up came with a knapsack designed for the pump and liquids. I try it tomorrow for my Dr visit for the first time.

I have all my meds in liquid form which Dana Farber prefers.

I will explore increasing my flow rate tomorrow. Thanks for the bag weight tip.

I agree, a little icky, but mandatory. I think their plan is to see what the Chemo does and then see what comes next. This afternoon my two grandchildren found out how I ate, but I do not think they really understood. I am very open as a means to help prepare everyone.

Thanks very much.

JaneE2366

Boston67 said:

Don't Know
Hi,

I will know more definatively tomorrow. We discussed two weeks ago, but I forgot the details. I do recall that it is a three chemical cocktail administered at Dana Farber on Day one and then the other two added for day two and three by take home pump. Then a return again in two weeks to do again. For a total of four such cycles.

The chemicals mentioned were: Trastuzumab, Olaxiplatin, fluorouracil, and Leucovorin. Yes I count four also. It may be that Trastuzumab is day one, and the others (with Trastuzumab) by pump on day two and three.

I do not know the dosages.

Keith

Leucovorin
Hello Keith,
First let me introduce myself....I am Jane, my husband Charlie has been battling stage iv EC for 22 months. He current chemo regime is Folfox which is Fluorouracil, (5-FU for short)Folinic Acid,& Oxaliplatin. The Folinic Acid is Leucovorin....I was told it was basically Folic Acid and it works in conjuntion with the 5-FU. He does this every other week...he is scheduled for his 5th cycle on Thursday. We were told there was a nation wide shortage of the injectable Leucovorin. Therefore, Charlie has had to take it in pill form. He must take 32 pills within 24 hours of starting his chemo....which wasn't an easy task when he was having difficulty swallowing. Thankfully he has no trouble eating soft foods since he had an esophageal stent placed in November so the pills are no longer a problem. I hope you are able to get the Leucovorin in an injectable form...it will make things a lot easier.
Good luck to you....I will keep you in my prayers as I do with everyone on this site.
Jane

Unknown

Boston67 said:

Don't Know
Hi,

I will know more definatively tomorrow. We discussed two weeks ago, but I forgot the details. I do recall that it is a three chemical cocktail administered at Dana Farber on Day one and then the other two added for day two and three by take home pump. Then a return again in two weeks to do again. For a total of four such cycles.

The chemicals mentioned were: Trastuzumab, Olaxiplatin, fluorouracil, and Leucovorin. Yes I count four also. It may be that Trastuzumab is day one, and the others (with Trastuzumab) by pump on day two and three.

I do not know the dosages.

Keith

This comment has been removed by the Moderator

linda1120

Boston67 said:

Thank you
Hi,

My set up came with a knapsack designed for the pump and liquids. I try it tomorrow for my Dr visit for the first time.

I have all my meds in liquid form which Dana Farber prefers.

I will explore increasing my flow rate tomorrow. Thanks for the bag weight tip.

I agree, a little icky, but mandatory. I think their plan is to see what the Chemo does and then see what comes next. This afternoon my two grandchildren found out how I ate, but I do not think they really understood. I am very open as a means to help prepare everyone.

Thanks very much.

J tube & more
Hi Keith,

I am glad to see that they got your j-tube in. It sounds like you are getting your strength back after your surgery. I am glad they did an exploratory so they know how to proceed. Congratulations on getting the Herceptin. From everything I have read, this will be very beneficial to you.

Jim has his j-tube and I insert all of his meds, some liquids, and some pills I crush and dissolve in warm water. We have never had a clog in the line. The feeding tube has been a real benefit for you and we are finding it to be the same for us. The portable pack really comes in handy. Jim goes everywhere with it.

It is good to know from Sherri that it is not abnormal to have gas issues and bowel problems. We have been experiencing this, so I guess Jim is normal!

I am glad your chemo starts real soon. I think you will feel better knowing the chemo is being
going after those cancer cells.

Linda

cjmac49

Update
Thanks for the update Keith. Keep up the good work.

Jim

Tina Blondek

cjmac49 said:

Update
Thanks for the update Keith. Keep up the good work.

Jim

Best of Luck
Hi Keith
Yes, thank you for your recent updates! Glad to hear you are in good spirits and that the j tube is working to your advantage. Keep up with your great positive attitude. Your mind plays a major role in your success! We will be thinking of you and praying. Keep us up to date.
Tina in Va