My dad's story...questions

16 years 3 weeks ago #14343 by Heenan
Replied by Heenan on topic My dad's story...questions
Pat and Ginger - Thank you so much for the medical supply information. I have checked and Byram is approved by dad's insurance - so I don't think that is a problem. And a special thank you to Ginger for the details - now I can compare pricing with Byram - Thank you! Right now dad is going back and forth between the Convatech and Hollister bags, so we will see which one works best.

As far the fluid intake...dad definitely did not take in as much water as Pat and Leigh recommended. Wendy did tell us that fluid intake was very important and that he needed to drink as much as possible, but she did not give me quantities. Since I am a numbers girl - this information will also be helpful.

Dad had a power port put in yesterday so we spent 1/2 day at the hospital. Everything went as planned and the dr. said dad did very well. His chest/shoulder is sore today, but otherwise he is feeling pretty good. He definitely got some of his appetite back yesterday. He was ready for some bfast as soon as he got up, but because of the port, he was not able to eat until after the procedure. He ate quite a bit in the afternoon and evening - so that was encouraging. He is also sleeping very well, so I believe that is helping quite a bit also.

His spirits seem a bit better. It is very cold here so he is not able to get out much, but hopefully next week the weather will be better and we can get out more.

Leigh (and everyone)- I would highly recommend the massage. They are great and will really lift your spirits!

With much gratitude and love for my dad,
Barb Heenan




"Live a good life...and in the end it is not the years in a life, but the life in the years."
*Abraham Lincoln

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16 years 3 weeks ago #14313 by Leigh
Replied by Leigh on topic My dad's story...questions
Hello Barb,

Great news about your dad's CT scan...they said the same to me on my last CT scan of the stomach and chest. No PET scan required as no visible metastisis.

My chemo nurse advised to maintain fluid intake during chemo treatment to flush kidneys and neo bladder. I was advised to drink up to 2 litres of fluid a day and they meant any liquid not just water. If your dad is eating lots of fruit and veg then he is also getting liquid from these also.

I have experienced headaches and tiredness after the Cisplatinum and increased my fluid intake which did help. It is more of a burden though when you are feeling weak because of the frequent toilet visit's.

The Emend works really well for me also and here in Holland it is very expensive also but luckily we have a national health system. They allocate 3 days supply with the Cisplatin and I can have Compazine as an extra if needed.

The massage you arranged your dad sounded wonderful and just the ticket for anyone in these circumstances. I too have never had a massage but certainly intend to pamper myself and get one booked up for a treat... :)

Barb..I hope your dad feels more perky soon and wish you all the very best..

Kind Regards
Leigh




Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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16 years 3 weeks ago #14311 by Patricia
Replied by Patricia on topic My dad's story...questions
Barb...forgot to mention on the medical side of things...I would check with his insurance company...they will tell you who they approve for ostomy supplies and should approve them as long as the doctor writes a script for them. I had to use an out of town supplier as my insurance did not cover the local ostomy supplier here but they were very prompt and kept my order on schedule and would send supplies overnight. And you were very smart to go straight to the supplier as all of them will send you samples...sometimes it takes a while to figure out what best suits your needs.
Pat

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16 years 3 weeks ago #14306 by Gene Beane
Replied by Gene Beane on topic My dad's story...questions
Heenan,
My husband uses Edgepark Medical for his supplies. He uses the Hollister 8478, they cost 85.00 for 5 bags, barrier rings are 88.00 for 10, powder is 10.75 a bottle, one ounce, skin prep is 19.41 for 50, adhesive remover whipes 50 in a box, 20.00......thats our list.www.edgepark.com, if you want to take a look.. I am glad dad is doing well, you both look great. If he would ever like to talk to my husband about there deversions pm me and I will give you our cell number. Sometimes it helps to hear from one guy to another about there experiences...Ginger

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16 years 3 weeks ago #14301 by Patricia
Replied by Patricia on topic My dad's story...questions
Heenan....very very important to drink the fluids when taking cisplatin........
Drink plenty of fluids. Drink about 10 eight-ounce glasses of fluid and urinate frequently during the first 24 hours after treatment to keep your kidneys working.
So if Dad is slowing down...get him to drink. They should have told you this.
Pat

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16 years 3 weeks ago #14296 by Heenan
Replied by Heenan on topic My dad's story...questions
Well - hello to all...It has been quite a week...
Last Wednesday (Feb 27) I took dad for a massage. (I did call his urologist prior to taking him and he said all was ok, just no deep tissue massage.) He loved it! The massage therapist was so nice...dad was able to hook up his overnight bag and lay on his stomach (which he had not done since prior to his surgery) due to her using the "pregnancy table" which has a small opening for the "big bellies." Dad had been a stomach sleeper, so he was so very happy to lay on his stomach. It is the small stuff that makes such a big difference. The massage therapist let dad check his bag a couple times to make sure it was draining properly-so that gave dad great peace of mind. He got the whole hour massage laying on his stomach - no flipping over for him! He had a big smile on his face when he came out - that was a good day!

On Thursday, Feb. 28 we met with Dr. Luke Nordquist with the Nebraska Cancer Specialists. He ordered the same chemo regime as Leigh and Rick - Gemzar/Cisplatin. Day 1 he will receive gemzar/cisplatin, day 8 gemzar only, day 15 off. The cycle will be repeated 4 times.

Dad started chemo yesterday (Tuesday, March 4) - so day 1 is complete. He received Emend, Alloxi and Decadron via IV. At the end of the treatment - they gave him a shot of Neulasta - to increase his platelette counts. They sent us home with Emend for day 2 and day 3 - and Decadron in AM and PM on days 2, 3 and 4 - and Compazine every 6 hrs as needed. Last night was really good, he had a good dinnner and was feeling pretty good. He had a headache by the time bed time rolled around so he took a darvocet. He did not get out of bed until 10:00 this AM. He was not feeling good - so I got him up and got him to eat a little cereal and take his decadron and compazine. He then slept until 2:00PM - woke up a little hungry - so fed him some peaches. Then he fell back asleep until 4:15PM - got him to eat a little pudding and take his decadron and another compazine. Now we will see how he is feeling for dinner? I have not been able to get him to drink too much water today - how important is this? I know that increasing your fluids after the cisplatin is important - but how important - and what is enough?

Just FYI - when we went to get the Emend before chemo - dad's copay on it was over $200 for 3 pills!! I called the Dr. office and told them - they were able to give dad the Emend via IV for the first dose and then they gave us the day 2 and day 3 pills. The pharmaceutical company that makes Emend will now negotiate with dad's insurance company to lower his co-pay - or the company will help dad pay for this medicine! Isn't that wonderful? I am so humbled by this extra effort that this pharmaceutical company is putting forth to make sure people get the Emend. Rick - I am so sorry that they screwed up on yours and you didn't get this on your first few cycles. Also - the Emend was just approved in the IV form a few weeks ago - so dad was one of the first at this cancer center to receive it via IV. They are excited to find out how he does. And so far - so good. The decadron and compazine were much more reasonably priced and only cost dad $3.94 - total!

Also - quick update on the bag situation...I called Hollister directly and they sent me some samples (3 wafers, 3 bags, 3 seals, 1 overnight bag.) They also got me in contact with Byram Medical Supplies. Does anyone else use Byram for purchasing urostomy supplies? I received a catalog from them and they seem reasonably priced? Please let me know if you use local pharmacy or a big medical supply company like this?

Thank you for all your information...please keep it coming!
With much gratitude and love for my dad,
Barb Heenan

P.S. Dad has received CT scans of chest, abdomen and pelvic area - no sign of metastatic disease on any of them. No PET Scan has been done - asked Dr. Nordquist about this and he thought that it was not necessary at this time due to the CT Scans showing no abnormally large nodes.

"Live a good life...and in the end it is not the years in a life, but the life in the years."
*Abraham Lincoln

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