Carmustine - Word for the Day - Friday, October 16, 2015

Carmustine

Generic Name: carmustine (kar-MUS-teen)

Carmustine is used for:

Treating brain tumors, multiple myeloma, Hodgkin disease, and non-Hodgkin lymphoma

This new treatment for Poppy is called BEAM.  The nurses call it "Beam Me Up, Scottie"


Okay, Kids...... The next few days I will be posting words like the one above.  These are the chemo drugs that Poppy will have for the next five days.  Look them up on the internet.... OR, I have Medscape app on my phone and it has some very good information... BUT, a lot of it can be confusing unless you're a doctor.

Furthermore, don't get freaked out when reading up on these drugs.  He will be monitored every day with labs.  So if anything is abnormal, they will know it immediately.  I generally just look the drug up for the side effects so I can relate these to Infusion or the doctor or email the nurses for any abnormalties.  The last treatment he began last year, Carfilzomib, indicated it had stroke effects that could occur within 72 hours of first dose.  The nurses even warned me of that...  OMGosh... I watched him like a hawk, but he made it.

Today we had our visit with Dr. Z.  We have dreaded it all week.  We knew it was just a follow-up and to inform us of the drugs he would be taking.  We already knew he would be carrying a bag with at least four chemos in it for five days, then the transplant and then more chemo. We were remembering back to 2008 when he carried the bag, but we didn't remember the five days after the transplant.  I was worried because I couldn't figure out why they would give him new babies next Thursday and then try to kill them out in the five days afterward with more chemo. 

We took time to have lunch before our visit.  I was sick all morning and was concerned I may be coming down with a stomach virus or the flu.  I really worried about how that would affect me as the caregiver the next week.  After we ate lunch and finally got up to clinic I felt better.  I think I just needed to see Poppy's face and that he was okay with everything we were about to dig into.

His very first question to Dr. Z was --- "I've been feeling wonderful the last few weeks.  My bone marrow biopsy and PET scan came back looking very good.  I had nine new lesions and since August I have three.  My labs are looking good and recovering nicely.  So why do I need all this chemo and the transplant? Can I not go back on the maintenance I was on before I got sick?"  Dr. Z -- "Your last chemo didn't work very well.  You got sick and you had new lesions come up.  We want to get you back in remission." 

Get this... He asked us to verify the stem cells Poppy received in his 2008 transplant.  Remember, he has 19 million in storage.  They took 20 million in 2008.  So, we told him 1 million he received.  He kinda rolled his eyes and wanted us to remind him what doctor did the 1 million.  We told him.  Then he informed us the 1 million was not enough.  Soooooooooooo, next Thursday he will be receiving SIX MILLION stem cells.  That means he will be getting SIX million new babies....  How in the hell are we going to feed six million new babies?  LOL

AND, I laid the schedule out before him that we had received where it indicated he would receive five days of chemo AFTER the transplant.  I told him that really worried me.  He looked it over real good and indicated that the schedulers use the wrong wording.  He, too, said there would be no way we would be killing the new babies with chemo after the transplant. 


I love this facility, because they answer all your questions and don't treat you as if you are stupid or you are beneath them in asking or being inquisitive.

So, we are READY to get this show on the road in the morning at 8:30  a.m.  I asked, too, how long will it take for him to become neutropenic (low immune system).  It should be by next Saturday.  So it will be mask city around here.  No visitors and definitely no work, except in the house. 

Here's a list of the chemo drugs he will be getting the next five days  OH, I forgot to mention -- He WON'T be carrying a camera bag around.  These will be IV, but done in Infusion IV clinic while he is there.  So, here they are:  From Saturday, 10/17 to Tuesday, 10/20 -- Carmustine, Etopsode (VP-16), Cytarabine (Ara-C). 

On Wednesday, 10/21 it will be the Mamma-Jamma - Meophalan (Alkeran). Then, on Thursday, 10/22 he gets the stem cell infusion which will be like getting a blood transfusion.  Three to four bags. 

When his WBC (white blood counts) drop, he will be receiving growth factor shots.  He will feel like he has a bad case of the flu because this will make his bones harder.

He will be receiving Lovenex injections in his stomach on day 1-6.  This is blood thinner to prevent blood clots.  When his platelets drop below 30,000, these will stop.  His platelet this week have been 75,000.  I would like to see them over 150,000...

Onward!  I bathed the kids today.  Their skin was so dry from the dirt and dry weather..  When I got out of the shower with them I noticed the balcony and the yard was soaked.  I almost jumped for joy that it had rained until I remembered I set the water time for the sprinkler when I got up this morning... Dammit

I have to share, too, I put a motion light over Poppy's toilet upstairs.  I feel certain he will be getting sick with this chemo and will be making night "runs" to the toilet in the dark.  I'm proud of myself.   I haven't told him, yet, so I hope when he gets up in the night and the light comes on that  it doesn't scare him enough that he pees on himself!  (BIG gut chuckle here)

Another bit of info... When he gets the Melphalan -- his whole body chemistry changes.  His body smells will be totally different.  Last time we had to do things like change his deordorant and cologne.  They (nurses) all call it "roasted corn".  I call it "funky".  It is quite noticeable.

Sooooooo, no 24 hour chemo bag.  No five days of chemo after the transplant.  No news we can't handle.  We feel a lot better and can do this with an open mind.  We know the signs to look for since we have been through it before.  We know the stupid questions won't go unanswered.  There are no stupid questions.  And, I double checked to make certain we have hiccups pills... (steroids cause hiccups).  AND, much of the dex (steroids) he has this time is eye drops.... I hope those things don't pop out of his head when he's doing all that extra energy house cleaning at 2:00 a.m.!!!

Good Night and Love -- Pepper