48 replies to this topic

[AmyH]

Hello everyone!

I was just diagnosed this past Thursday with CML.  I'm 30 years old, have 3 children ages 6, 4, and 1.  My husband is in the Air Force and we are stationed at Ramstein AFB in Germany.

I'm very positive and I feel like God will definitely get me through this, but I'm kind of going through some different phases right now.  Kind of like grief.  I'm sure you can all understand.  I'm also a little scared.  :/

Started Gleevec yesterday.  Red blood cells are going up and my white blood cells are kind of down and up right now.  I've also had 3 bags of blood.  Hoping things continue to look up!    Looking forward to getting to know all of you.

Amy

[Judy2]

Hi Amy,

As everyone says welcome to the club nobody wants to join. I don't know a whole lot about the technical stuff , others will help you with that, but I can offer tons of support. This is a great place to ask questions and just vent when you need to. It is a good idea to keep records of your blood work and find an onc who is well versed in CML. You will have a normal life span with the drugs we have and new drugs are on the horizon. We are all hoping for a cure one day.

How long will you be in Germany? Will you be coming back to the U.S. after that? Great thanks to your husband for protecting us. Post often.

Judy

[AmyH]

Hi Judy!

Thanks so much for the warm welcome.  My ONC is super awesome at this hospital.  I really trust him, but I will definitely keep up with my blood work.  Everything has been so crazy the last few days that I haven't even thought to write this stuff down. 

We are suppose to be in Germany 3 more years.  Yes, I'm sure we will come back to the US.  We would like to be stationed in IL next where our family is.  Anyone go to an ONC in the St. Louis, Missouri area?  That would be the closest city we would live by. 

Definitely don't want to join the club, but I am very thankful there is one out there.  I definitely need the support. 

How long will my back be sore from the biopsy? 

Amy

[Ted]

Welcome Amy,

Sorry to hear you had to join this club. I was diagnosed December 16th, it's tough at first but you will be OK. I had my bone marrow on a Monday morning and by the end of the week my back felt fine.Thank your husband for providing a great service for our country.

Ted

[Pin]

Hi Amy,

It's really nice to meet you I'm 30 this year too, but unfortunately don't have any children yet...one thing I regret putting off now!

I know it sucks - but welcome to the group, it was the one good thing I felt in a sea of scary things. People here are wonderful at helping out with any questions you may have or just if you need to vent about what's happening.

As many people told me when I was first diagnosed (June 2011) the first few months are the worst, and then it gets better from there. It's hard to see in the beginning - all I could think about was how scared I was, but they were right and it does get much better with time.

Germany is a really interesting place, have you been able to see much of it? Are you changing your plans now and coming home sooner than 3 years?

My back was sore for about a week after the biopsy, hope yours feels better soon!

Pin xxx.

[AmyH]

Okay, thanks Ted!  Nice to meet you!

[Judy2]

Hi Amy,

My back was sore for about 24 hours but everyone is different. Next time you see your onc. ask him if he did a baseline PCR test, if you have the results you can track your response over time. The PCR test measures your molecular response to the medicine. Others on the board will be able to explain all about your PCR a lot better than I can but the goal is to get to MMR or to have a major molecular response. Anyway, ask a lot of questions. We are all here for you.

Virtual Hugs,

Judy

[AmyH]

We have been to a few places in Germany, but have some bigger trips planned for over the summer.  I hope I'm better by then ...enough to travel some.  I'm not sure if we are going to come home early...I think we might just stay here b/c we love it here. 

Nice to meet you Pin!

[AmyH]

Hmm.  I think he did Judy.  I think I get another one of those at 3 months, right?  I got so much information all at once and I was drugged from the biopsy and then started right away on another drug so I am having a hard time keeping things straight.  My husband will probably know though. 

Thank you judy! 

[Happycat]

Welcome, Amy!  Wish you weren't here (or me either), but such is life.

My back was sore about  2 wks, guess that makes me a cream puff compared to Judy, lol!  Give yourself at least 2 months before taking any rigorous trips. I took a trip to Va about 2 wks after dx, and wouldn't you know, the pain from the mess set in o the ride down!  But by the time went to TN about 2 months later, I was okay, able to keep up. Although I skipped the day hike my dh took with the kids. Good thing, because it poured rain!  I went shopping with my MIL instead. 

Hope you do okay and your dh can be around in the next month or so. I suspect you will need him around to help. How is your family taking the news back in the states? 

Traci

[Pin]

You will be feeling much better by summer - I'm six months in now and after the initial side effects have subsided, I'm really feeling a lot better.

Germany is such a beautiful place. I was very lucky to be able to travel there during the soccer world cup in 2006 - we actually stayed in a little place called Kaiserslautern,  as that was where some of Australia's games were being played. We went to a pool with an indoor slide one of the days and I remember meeting some Americans there as there was a US base nearby. Is this near you? I'm not sure how many there are over there!

[Marnie]

HI, Amy, and welcome to the club.  You will find lots of support here, and lots of knowledgeable people.  You are in great company!

Marnie

[GerryL]

Hi Amy,

Welcome to the discussion board - one suggestion I can give you is to make sure you get all the printouts for your bloodwork, that way if you have any questions it makes it easier for our brains trust to know what is happening.

[GerryL]

Hi Pin,

When are you due for your next test?

[pammartin]

Hi Amy,

Welcome, glad you found this site, it has been one of my daily stops while on the computer.  I was diagnosed this past October.  Please feel free to ask questions (huge amounts of information and experienced people), they will be given the attention they deserve.  You can vent, share a laugh, post your test results for feedback or just read others posts if you do not feel like joining in right then.  I would suggest you read archive posts from Trey, he has a great site for newcomers, lots of information that is written for understanding.

Keep us posted on what is going on with you, we care.

Pam

[Dina]

Hi Amy,

I was diagnosed the first week  right after my 36th birthday, I was shocked, scared and devastated,

but it does gets better with time, the more you know about the disease the more confident you will get,

so just hang in there you will be ok.

[Txmom.4]

Hello Amy! Like all those before, sorry you had to join this club, but you will be so glad you found it! I was dx at the end of Sept and it really blindsided me, as it is for many on here.  I was terrified, I am not quite as young as you, but I too have younger kids and at first didn't think I'd be around to see them grow up.  I had a few glitches with meds after I started them, but it was all resolved and now my numbers seem pretty good so far.  I have asked many questions on here and always had people who would give answers, share experiences, etc .  I am on sprycel, hAd some initial aches and headaches but they resolved, now just having problems with low leg swelling, but it is manageable. I still get a little scared sometimes but as time has gone by it has been easier.  I am glad you like your doctor, that's important! Ask questions to him/her, ask questions on here, take some deep breaths and know there are people ready to listen & help with this new diagnosis.  The medications for this kind of leukemia have been successful for many many many people for years!  Read Treys blog & you can type topics in the search bar for previous posts for info.  God bless you & your family!

[Tedsey]

Amy,

Although a little sore, I dragged my two toddlers who were 2 and 4 shopping the next day.  We went to 3 different stores.  2 more than usual (normally they just cannot handle more than 1, but I guess I was determined).  It takes a while for the pain to subside, but it has never kept me from doing what I have to do.  After my 1st BMB, I was swollen for about 2 weeks, I learned that icing it immediately afterward helped a ton.  I healed a lot faster with the 2nd. 

Hope you heal up soon.  Best of luck and good health,

Tedsey

[AmyH]

Yep, Ramstein is right by Kaiserslautern!   

[AmyH]

I'm in the hospital right now and they are testing me everyday w/my blood.  Then I come in and out of the Oncology dept for more tests like once a week for awhile and then at 3 months a bigger test or something like that and then at 6 months I have another biopsy.