Induction Chemo

[Lori Patrick]

Hi to all. I am a club member as of last week. MDS-RAEB-II 15% blasts. I am scheduled for 7 days of Induction Chemo beginning next Wednesday and then hopefully SCT. What can I expect during the Induction Chemo? This is very scary. Lori

[Greg H]

Welcome Lori!

Glad you found this spot. I'm afraid I can't give you any insights into induction chemo, but there are plenty of folks here who can fill you in.

Has you doc told you which drugs they will be using?

Hang in there!

Greg

[Arkrum]

Hi,
I've just come out the other end of induction chemo, currently day 35. And with treatment at Princess Margaret Hospital in Canada, this is my relative point of reference. There is no question that every patient was handled as a unique case, the way we responded to the chemo drugs as well as everything used to counterbalance any negative effects. The doctors and nurses I dealt with all knew what was going on with me at all times, and I was in constant discussion with them about the process. I had many difficult times with pain & discomfort, disorientation, loss of appetite and drug side effects where the cure was much worse that the affliction. I had a nagging fever issue that turned out to initially be a side-effect of an anti-fungal drug ('Ampho' or Amphotericin, I believe)I was on, then subsequently an antibiotic. 'Drug fever' is how the doctor finally referred to it, but it caused me 10 days of discomfort. Of course over that time my counts increased to where now I am in remission. Mind you I still have 2 'consolidations' and a transplant to look forward to.
I wrote a blog about the my experience at PMH, which is certainly the best facility in Canada.

hcrengager.wordpress.com

I hope some of this helps.
Best of luck,
Mark Rutherford

[Lori Patrick]

I have no idea of the drugs to be used for Induction Chemo. I have read on the internet that there is a 30% mortality rate. My doc said 5%. I am very anxious... Lori

[Greg H]

Originally Posted by Lori Patrick

I have no idea of the drugs to be used for Induction Chemo. I have read on the internet that there is a 30% mortality rate. My doc said 5%. I am very anxious... Lori

Hey Lori!

There are lots of scary numbers on the internet. They are definitely worth looking at, because you need to know what you are getting into; but you have to take them with a grain of salt, because they are averages that include all sorts of people -- including some that are likely sicker and older than you are.

If your doc says 5%, then I am willing to bet you are being prepped for a reduced intensity, non-myeloablative transplant (which some folks call a mini-transplant). The drugs for that are not as harsh, so there's a lower mortality rate form the chemo itself.

You can download an intro to transplants from NBMTlink here.

You should also go the the Leukemia & Lymphoma Society website and download some of the publications here. Or just call them at this number (800) 955-4572 and get them to send you stuff.

Also call the AA&MDS International foundation at (800) 747-2820 and ask for an info packet. Or you can use their online form here.

Both the LLS & AAMDS websites have lots of archived webinars you can watch to learn more. It takes a while to get up to speed with the lingo, but it's definitely worth reading all this stuff to learn as much as you can. That way you know what questions to ask your doctor.

Will the doc you are dealing with now be handling the transplant, or will they be referring you to a transplant center?

Take care!

Greg

[Lori Patrick]

Greg, Thank you so much for all the helpful links. I am sure later this week while hospitalized I will be checking them out. I'm not sure if MY doc will be doing the transplant - I will be at a hospital (Simon Cancer Center) that deals in just Cancer type issues.

I think I am a bit numb to all right now. My family is acting like I will not be coming back home (which in reality I may not) and they are soaking as much time with me as they can, which is very sweet. I, on the other hand, am ready to get to the hospital and get this show on the road! I sound cold, but this waiting is hard.

How are you by the way? Give me your update. I hope we talk more. Send me any info you feel I may like! Lori

[Greg H]

Hey Lori!

Good luck on the upcoming hospitalization. Some of the info from the organizations I mentioned is really good for sharing with family members who may not quite be clued into the process.

There are some great video and slideshow webinars and webcasts on the AAMDS site here that you can take a look at if you have internet in the cancer center. On the other hand, while you are experiencing the rigors of chemo may not be the most fun time to watch stuff like that.

Thanks for asking about my status. Half my chromosomes are warped, but I actually went eight weeks (instead of the usual six) without a transfusion last time, so I am feeling optimistic. I'm going up to NIH at the end of the month to see if I can participate in a clinical trial they are running on a drug called Campath that seems to work pretty well for folks with my profile. If that doesn't pan out, I'll be looking at some Vidaza in preparation for transplant at some point. I'm not sure when. When you have lower risk MDS and it's not playing havoc with your everyday life, it's pretty hard to decide to go for a transplant.

Again, the best of luck. I hope the chemo treats you well and you are able to update all of us from the hospital. Either way, we will all be rooting for you.

Cheers!

Greg

[Mary4Mike]

Lori,
So glad to see you found your way to this forum. I have been reading it for quite some time, but have never registered to post. The MDS forum has really slowed down and this forum has many posts on transplant. I decided to register so I can add my imput if there is anything I think I can contribute.

I am praying for you as you begin this journey on Thursday. Try to post your induction drugs.

Mary

[Lori Patrick]

Mary, I will do. I am so ready to begin. Hugs and Blessing to you. Lori

[Lori Patrick]

Hey to all! My Induction drugs are: (drum roll..):
Daunomycin (Daunorubicin - generic) - 15 minutes every 24 hrs for first 3 days;
Cytosa (Cytarabine - generic) - 24/7

Admitted yesterday with blood cells at: wbc - 4.6; hmg - 10; plt - 107

To begin induction chemo today. Anyone know of the above mentioned drugs? OH today is my 52 birthday! What a day to be chemotized, huh.

I have a journal and guestbook on CaringBridge if anyone cares to check it out. I'll anxiously await any input from fellow club members on my info. Hugs and God Bless all of you. God is good. Lori

[Mary4Mike]

Happy Birthday, Lori!!! You have so much to be thankful for today! Advancements in medicine, a loving and supportive family, and your faith!!

We will be tracking your progress as you work towards your "new" birthday!

Continued prayers for you and your family!!

Mary

[Neil Cuadra]

I have a journal and guestbook on CaringBridge if anyone cares to check it out. I'll anxiously await any input from fellow club members on my info. Hugs and God Bless all of you. God is good. Lori

Good luck, Lori. We're rooting for your success.

If you'd like to, you can put the address of your CaringBridge page in your forum signature and/or the Home Page URL field of your user profile. That will make it easier for people to follow your story.

[Greg H]

Hey Lori!

Sorry to be late with this; yesterday was nuts!

A most happy birthday and great good luck with your chemo. I can tell from your posts that you are a real fighter and I have no doubt that you will do just fine.

Do keep us posted on your progress and know that everyone is rooting for you!

Greg

[mausmish]

Hope this turns out to be a great year for you, Lori.

[Mary4Mike]

Lori,
I pray that all is going well for you so far. Please post your Caring Bridge site so that we can access it and correspond with you.

Stay strong!!!

Mary

[Lori Patrick]

I have a journal on Caring Bridge. It is Caringbridge.org and look up Lori Patrick. Let me know if you cannot find it! Thanks for the birthday and well wishes! I am having a good day again today. It is so nice to read these little notes.

Today they stopped my iv of fluid because since I am now scheduled for phenergan every 6 hours I am able to drink liquids! I was trying to not take anything unless I had to, but poo on that crappy! Give me drugs man! lol Read my caring bridge site. This hospital is so nice. It is nice that they offer so much for those of us who are "living" here. Oh, my potassium level was down today so I have to take supplements 3 times today. My counts today are: wbc 3.8; hg 9.3 and plt 97.

Hugs to all. Lori

[cathybee1]

Hi, Lori. Wow, this has been quite a ride.

I found your caringbridge page. Your hospital sounds like summer camp. I hope you continue to feel well and can take advantage of all the wonderful activities.

If anyone is having trouble finding Lori's journal, go to caringbridge.org, and at the "website" prompt, put in "loripatrick" (all one word).