For a couple of days, I have been thinking about you Minnie and I believe your last post was June 6 so it has been long time. Your OCF buddies would like to hear from you and if you are feeling lousy..can your daughter(s) let us know something??

Sending hugs and prayers,

Deb

Deb .... I have been thinking of Minnie too, the last several days - I hope she responds soon. Ditto on the hugs and prayers! Warmly, JaneP

I miss Minnie's post too. I hope we hear from one of her family but would rather hear from her.

Minnie's been in my thoughts too. Would love to hear an update from someone if she doesn't feel up to giving one herself.

Has anyone been in contact with Minnie or her family recently? I sent a PM on the 23rd. I have been very worried because she usually posts even if the news isn't great. We haven't even had a post from her family.
I just sent an email to one of her daughters. I asked her to respond on this thread. Perhaps we will hear from her soon
Malka

I sent her a quickie email yesterday and haven't gotten a reply. I do hope all is well.

Take care,
Eileen

I sent her a snail-mail card several days ago. I just wanted her to know my thoughts are with her. I can understand why it might seem like too much to check in here at times.

Nelie

Hello
I sent her an email on the 13th to tell her I was thinking of her
on that day she had chemo. I have been checking every day to see if she will post. She usually does. If her girls are checking on here, please tell her how much we are thinking of her!
Debbie

Hi everyone,
I hope you all know how important your thoughts and prayers are to my mom. Your cards and packages make her days easier. She has a great supportive family to fight with her, but it is you guys who truly understand what she is going through.
Mom is doing well. Her second round was hell compared to the first. She was hospitalized after a few days with the 5FU pump. She couldn't breath normally and wasn't able to make sense of anything that was going on. It was pretty scary, but they stopped the pump and within a few hours she was feeling better. She kept saying she felt drugged (which she was with all the chemo and other meds). We had to stay over night in the hospital because the Dr thought she had pneumonia. The nurses treated her horribly as did the doctor who was there. It was a really awful. We got her home so she is doing a million times better now.The fatigue and bone pain have lessened so she is able to be more active. She even drove a mini-racecar when our family went to Motor World for the fourth. One more round of the chemo and then we can see if it has done it's job. Her voice has come back and she no longer chokes all the time those were symptomatic of her new tumors so we are feeling optimistic.
I wish mom could write this herself, but her neck is so stiff she has a hard time using the computer. That medi-port has given her so much trouble, we can't wait to get it taken out.
Again thank you all for your thoughts and prayers, trust me mom can feel them.
With Love from Mom,
Amy

Great to hear that she is on the mend. Your Mom is a big part of this community, and we are all rooting for her!! Get back soon, Minnie!

Thanks Amy. My thoughts will continue to be with her.

Amy, Thank you so much for the update. I was sorry to read how bad that second round of chemo was, and that she was treated badly in the hospital (there is nothing worse than that when you are at your most helpless and vulnerable) but it's good to know she is on the mend- and that there are signs the chmo is working.

I hope that either you or Minnie will let us know the date for that third round of chemo so I can add some special prayers for Minnie on that day and the hard days after - and it's great to know she can feel the love we all send to her in our thoughts and prayers. I hope you can feel it too since I know everyone here is thinking about Minnie's family going through all this with her as well.

Nelie

Amy,
Thanks for the update ony our mother. May she continue to improve and have no more crazy suffering. It is good to hear that she was able to go out for a "drive." We look forward to her posts.
Hiss, hiss to those nurses and the doctor. I hereby send a curse to them: May they all have sore toes and have to be on their feet for exra long hours this week.

Thanks so much for the update! So glad things are getting positive now. I had a bad experience in the hospital too. I don't know why they are so mean when you cannot move or talk or do anything! I still talk about it.
Thanks for being in touch. It was awful not to know. Your Mom
has helped us all so much! Sending hugs and good thoughts to Minnie and the whole family!
Debbie

Amy,

Thank you so much for giving us an update on your Mom...I have been so worried. Glad your Mom is feeling better and we all hope that the next round is not too bad and all of you can get back to some normalcy.

Sending strength and prayers for your whole family....

Deb

Minnie,

Get well and beat this crap.

Her next chemo date is the 11th.
Has anyone here had a problem with the 5fu? Or with Emend? It is a new anti-nausea drug. It kept the nausea away for the three days she took it, but I think it was a major contributor to how drugged she was feeling.

Amy,

My sister took Emend during her chemotherapy for breast cancer. She still swears by it - but of course, everyone responds so individually to all of this stuff.

- Margaret

Amy:

Thanks for posting for your mom. Ive been thinking of her and hoping she is doing ok. Its so difficult for everyone to go thru it again. I will keep her in my prayers.

I took Emend without problems. I did run into problems with compazine.

Christine

Amy,

I just had a thought - did your mom take Ativan? I had a horrid reaction to Ativan, amnesia and generally feeling like a zombie. It seems to be one of the 'go to' drugs for anxiety and nausea, but I've refused it for this go-around.

- Margaret

Minnie's favorite daughter - We are so happy she has her wonderful family to support her thru this second battle - we are pulling for her to soon be back to her "normal". Sounds like driving the mini race car is a step in that direction! Give her our love and well wishes. Warmly, JaneP

Amy,

Thanks for the update.

Please give your mom a big hug from me and I hope she is feeling better every day.

We miss her wisdom and warm caring advice.

Jerry

They gave me the 3 Emends to take the day of and the 2 days following each of my chemos and it worked for the first one but not so great for the next 2 but I'm sure the radiation played a role. Back then they cost like $100 a pill?

Hi, Amy,

Thanks so much for the update on your mom. My husband had a very similar protocol of chemo drugs (as your mom is having now) as "induction" chemo prior to beginning combined radiation/chemo. The 5FU (he had it for 24/7 for 5 days at a time in combo with cisplatin and taxotore) made him quite sick for about a week or longer each time. Because of taking Emend and having 3 types of chemo and various painkillers, etc. we never really knew what was making him feel lousy but we did think it was the 5FU. I do remember how we would literally lay in bed and count down the last few hours until I could unhook him from the 5FU at the end of the 5 days. When he just had cisplatin along with radiation it was "easy" compared to the multiple chemo protocol(until near the end of radiation when the radiation effects really kicked in) . In retrospect, it's a really difficult protocol that your mom is undergoing. Plus, your mom began this before fully recovering from a difficult surgery.

My thoughts are with your mom and your family as you go through this. Please let us know when she has her next treatment so that we can be thinking of her.

Sophie

David,
The Emend is $150 a pill now! The manufacturing company is giving mom hers for free since she doesn't have insurance. When we went to fill the script the first time I thought I was going to cry at the cost! The zofran was equally as expensive over $350 for about 5 doses.

Sophie you are right it is a lot for her body. She is doing cisplatin, taxotore and the 5fu. She did radiation 5 years ago but because it caused so much damage she can't have it again. This is her first time with chemo. The doctors are hopeful that since this is her first try she will have good results.

We are trying to get her out on a boat this week before she has her treatment friday. Anyone have any problems being in the sun?

Always thinking of you Minnie. Love and light from Helen

The cost of gas is almost as bad as the cost of meds. I remember one day coming home from radiation and my RO's nurse had called in a script for some pain meds and my wife was driving and she pulled into the Walgrens and the pharmacist said "that will be twenty eight fifty" and so my wife handed her $30. Promptly the pharmacist said "no ma'am, that's twenty eight HUNDRED and fifty dollars". My wife said you're crazy and drove off. While I agreed with my wife I was a little concerned about how fast she made that decision to leave me without pain meds. lol

Amy:

If your mom is going to be out in the sun, she must use a very good sunscreen and cover up. Especially if boating with all the reflective rays, use a very high SPF. Alot of people on here have mentioned Nutrogena works really great.

Christine

I asked here about 5FU and the chemo doctors here no longer want to use it due to significant "adverse reactions" including, but not limited to one patients demise. Obviously it is a tough drug to handle but from what I have read here it is effective if tolerated. Like the others on this board, I think of your mom often, and am sending positive thoughts and prayers your way.

Sometimes you wonder just when you will catch a break! Enough already!!!! But, we don't get to choose any of this, all we can control is how we deal with it all. Having said that, I know your Mom is a trooper and will handle all of this as well as ANY human ever could!

Donna

Sure is good to hear she is doing good and able to take a ride. I want to add to Malkas curse. May the fleas of 1000 camels infest the bodies of those Drs and Nurses.

Hey Jim,
That's a pretty good curse. Why didn't I think of that one
with my friendly "staff".
Thinking of you today Minnie. So glad you have your
wonderful family with you.
Debbie