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Old 03-23-2006, 03:09 PM   #1
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Janmarie2 HB User
Frustration

Hello everyone I just need to vent alittle as I just do not get it. My mom is getting taxotere and gemzar, she is suppose to get it every week for 3 weeks then a week off. First round she only got two weeks because of the fatigue and the fact she had bad cramps ( that I think was from something she ate) they decided she could have two weeks off but then some mistake turned it into 3 weeks which upset her doctor very much.

Round two she got two weeks then last week had a low blood count which they thought was due to a mild infection so gave her cipro for 5 days and held the chemo that week.She felt quite a bit better then she had with round 1 despite the low blood count. This week she had her blood tests which were ok so called to set up her chemo and they said you have to wait until next week as we are booked and have no available times this week. I don't get it as she is suppose to be having it 3 weeks in a row so they should have scheduled her for this week last week when they had to hold it. Now she will have had 2 weeks off so my guess is she once again does not finish a round, but instead will be starting round 3. ( it is important to note here during this 2nd round she has slacked off on her immunopower and the juice she is using and has not been taking it everyday why I am not sure and the fact that she had the low blood count makes me believe that those things had been helping her and preventing such things until she started slacking off on taking it).

I have always heard that unless you have a medical reason that it is important you get your chemo on time so I really am ****** that she now will have had 2 weeks off. I did drive down figuring she would get her chemo this week and when she didn't I decided to use the day to take her on an adventure.We drove down to Long Beach along the marina to check out a couple stores then drove down Pacific Coast Highway to Huntington Beach and had Lunch while we were out. It was a beautiful morning to take a drive like that and she feels well enough that she enjoyed the outing. I feel blessed that at 20 months and being on third line chemo ( and that is not counting Tarceva) that she is doing as well as she is. I hope those of you just starting out on this adventure are as blessed . I never expected her to have done so well for so long back when it all started as Stage IV NSCLC with pleural effusion and mets to the liver so once again to those of you new to life with lung cancer never give up hope and do not listen to the doctors guess of 6 months to a year as you just never know.

Jan, I do hope Bud continues to feel better and that you get to let your guard down and relax for a bit. Ron, I hope Bec continues to be having some good times too. Kim I hope Stan is doing better , the chemo he is on sure sounds like a tough one. I thought about you as we drove down PCH knowing he gets his chemo down in NewPort and I prayed that if you were there for chemo that day that you both at least got to enjoy the beautiful day along the coast a bit as it was beautiful! My hugs , thoughts and Prayers go out to each and every one of you as you are always in my mind. JanMarie

Last edited by Janmarie2; 03-24-2006 at 04:53 PM.

 
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Old 03-23-2006, 04:47 PM   #2
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rockie HB User
Re: Frustration

Hi there JanMarie...was thinking about you today. Sounds like they need to get their stuff together over there. You know though, I know that in CA there are far more patients than we have out here in IN but I have run into the same thing. Bud went today for lab work. They were going to do only hemoglobyn and I kept saying no....they need to do INR too...to see about the Coumadin...no...they said it's not on the order. I told them he went for a blood transfusion last week, he needs his INR level checked. Sure 'nuff...he needed to have it checked and it was too low. But, they acted ticked that we kept asking about it. They said it was the blood transfusion that caused the drop since the two units he received had not been treated with blood thinners. OK I accept that. I asked about the B12 shot he is supposed to have the week before the Alimta treatment...I read that in the booklet on Alimta. Did they give it to him? Nope. Soooooo, if we go next week and they chew us/him out for not getting his B12 shot they are going to meet the Italian/German in me. He does get daily doses of vitamins called Stress Tabs which are a concentration of B complex vitamins, niacin, folic acid, etc. So, he is getting his B12, but I worry perhaps not enough?

Bud bought me dozen roses yesterday. This is only the 3rd time he has done that in the 3 yrs we have been togther. So it was special, very special. They are apricot/peach colored...my favorite shade! Just the thought was so endearing.

Ron and Bec, hope you are having a good weekend. Kim and Stan, hope Stan is doing well and having enough energy for the kiddo's. Pat in KY...blessings to you for the wonderful inspiration you provide to everyone, Dave in VA--how did the results of the CT go? I remembered, and prayed for you today. Let us know.
JanMarie and mama Pat.....hang in there and glad you took your mama for a nice drive. I just love the Pacific Coast Hwy. I used to take it to Santa Barbara from L.A. of course many moons ago... But it was sooooooo nice. The CA coastline is like none other except maybe the NW. But still, not the same.

I keep praying for Tricia and Karen and Cam and Serenity and Audrene who are still coping with their losses and my love reaches out to them.

God keep us in the palm of your hand, where we can be safe and loved. Amen.

Take care everyone and I hope for a good weekend for everybody.

Love, hope, prayers and hugs from SW Indiana....
Jan

 
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Old 03-24-2006, 08:30 AM   #3
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Kimslos HB UserKimslos HB UserKimslos HB UserKimslos HB User
Re: Frustration

Hi JanMarie,
Thanks for coming to vent and so nice hearing from you even though you vented, you even shared some beautiful times you are sharing with your mom. I am sorry your mom is being treated so unfairly. I know it is hard for you in the medical field to watch her not get the needed medical treatment in a timely manner. I do know that when we asked for Stan's chemo to be postponed for one week the doctor told us it was okay with the treatment plan he was getting to take a break of one week, but I do know each treatment plans are different. I hope it has not messed up your mom, but based on what she is doing as far as drives and lunch and getting around she sounds like she is doing well. I do hope and pray she will be back on chemo next week! We have been very fortunate and they have ALWAYS been able to squeeze my husband in for treatment. We are very fortunate where we live with the medical care! The doctor my husband sees is in a group with 2 others and they share a huge chemo center with about 26 chairs. Yes, sad to think that those 3 doctors have that many patients...breaks my heart. I think your mom is a true fighter and wants to live and is proof that a positive outlook sure can change things. Give her a big hug next time you see her!
Jan, I am so sorry to hear you are going thru about the same problems with Bud's bloodwork. Stan is also on blood thinner so I am constantly making sure they check the level. Oh, how sweet Bud got you your favorite shade...what a dear man even with all he is going thru! Did you take a picture of you and Bud in front of the arrangement of flowers? I think that would be a beautiful photo!
Stan finished chemo last Friday and boy it sure knocked him down good! We go in a bit to get another shot for his white count. He also ended up getting hives! I could not believe all he has been thru and now gets that! We have not pinpointed the root of the hives but have an idea. He drinks some juices to help the immune system. They are all natural but think his body with the chemo did not like it. I hope Stan can get some strength up by next Tuesday so we can celebrate his 52nd birthday and make it very special with him. The boys are excited for dad to feel better. The mood in the house has been sad while dad is going thru chemo, but the boys understand. I think tonight the boys and I need to put our heads together and get dad his favorite dessert and dinner planned for his birthday. (not sure what that is anymore since chemo has altered his taste buds!)
I need to run...off to Newport Beach for the doctor's appt. I hate to share this with all of you in the cold, but I think yesterday reached 80 and it is just beautiful weather which makes Stan feel much better. You all take care and sorry I have not been on much but overwhelmed taking care of Stan while he has been sick. God Bless all you....
Kim

 
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Old 03-24-2006, 10:00 AM   #4
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Re: Frustration

JanMarie, I got frustrated just hearing about the lapse in your Mom's treatment. It is very important keeping to the treatment schedule. I can't believe any health professionals would be so ho-hum about a patient. I pray that she gets to keep her schedule from now on, and shows improvement.
Kim and Jan you and your families are also in my prayers daily. The ride down the PCH sounds like heaven to me. My yougest in in CA and I long to be there in the warmth sometimes. We had some spring weather in KY and then it tuned mean again. God bless each of you, Pat

 
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Old 03-24-2006, 05:11 PM   #5
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rockie HB User
Re: Frustration

blessings to all of you. Kim, you have a great birthday bash for the birthday boy! Pat, you and I share the same weather, so girlfriend, I understand. Spring one day, snowing the next. Owensboro was supposed to get snow the other day, but it veered north and hit Vincennes, Washington, and Terre Haute instead. We just got misty rain and cold winds. I saw a couple of darned snow-flakes, but they did not last long. I bet all of the school kids were disappointed.....awww...no snow day! :-)
My stomach has been soooo upset and my colon too. I do think it's nerves. Thank goodness for Curves. I know it's not much, but I have lost 4 lbs and I am beginning to feel the toned effects of the workouts. I wish we could all meet for a giant pic-nic of sorts, somewhere in the middle where everyone could meet.

Love you all and pray for you always.
Jan

 
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