29 replies to this topic

[CMLSurvivor]

My husband and I are thinking about having a party for my CML 5 year anniversary date. My question is, do I count from when I was diagnosed or from my "Complete Molecular Response: test date?  I was thinking the "Complete Molecular Response" date is a bigger deal then my CML diagnose date. My husband thinks by diagnoses date is a bigger deal we are in debate about this. What do you guys think?

[GerryL]

I vote for CMR date - for me, I always think of the diagnosis date as a negative date, not something to be celebrated. Which ever date you choose have a lovely party.

[NotJack?]

Have 2!!  (and where is the party?)  Jack

[CMLSurvivor]

In Sunny Southern California. I like your idea, 2 parties!!!

[jcoon]

I love this positive post!  Im in sunny southern california too.  i was just diagnosed last september and am new to all of this..  I saw your happy post and wanted to say congrats and enjoy the celebrations!

[jcoon]

Hi billie, thanks!  im new to this whole site and am still becoming familiar with it. 

[pammartin]

Love the idea of two parties, we are all invited, right? (Shades for sunny California weather)

[CMLSurvivor]

Sure, The more the merrier!!!! We are about 1/2 hour from Palm Springs right on the edge of the desert. In the summer we get as high as about 110F degrees wind chill is about the same. Air conditioning is a necessity not a luxury item here. And in the winter it drops down to about 32F degrees at night.

[jcoon]

Hey!  i grew up in Yucca Valley! you probably know right where that is.  im now working and living in Pasadena.  small world

[Susan61]

Hi:  I use my Anniversary Date as the Day I was Diagnosed.  For me it will be 14 years this Dec., and to be blessed to survive for any length of time is reason to celebrate.  I agree with your husband.  Years ago we would not have had a chance to celebrate years of survival, as most did not live that long after diagnosis under the old treatments.

     Sharing how many years since you were given the news of having CML, is a good goal for others who are just newly diagnosed not knowing what to expect for the future.  We never forget the day we were told we had CML.  IT will always be clear in our minds.  We all remember the whole day like it was yesterday.

     Celebrate for the years since you were Diagnosed.  This is just my opinion, but Congratulations on whatever day you decide on.  Either date is reason to celebrate for what you have accomplished.

Susan

[CMLSurvivor]

Thank you all!!! Of course I know where Yucca Valley is. I am in Moreno Valley, the area I live in is the as far Southeast in Moreno Valley you can get. They renamed our area recently to Rancho Belago.  Our property is right up against the mountain (most people outside of California would call it a hill). Lots of roadrunners, rattlesnakes, some mountain lions, and deer. We love it!!

[jcoon]

wow susan congratulations on 14 years!  any advice for us new-Bs?  i am 7 months in.  which medication are you on, and have you been on the same one the whole time?  i just like having a little glimpse of what my next 13 1/2 years may be like

jenelle

[jcoon]

i love the desert too.  nothing can compare to those summer nights and stary skies.  and the sunsets!!  my husband doesnt quite understand it yet when we come back to visit, but i miss it still

[PhilB]

I agree with Jack.  You have to have 2 parties because they are two very different occasions.  For the dx anniversary party you should be up there on the dance floor singing along to Gloria Gaynor's 'I will survive'.  For the PCRU party 'Celebration' by Kool and the Gang would be more appropriate.

Any suggestions for other suitable tracks?

[CMLSurvivor]

I think I will have two parties. The dates are 10 months apart. I think that is a good span between parties.

[Happycat]

Maybe I'm the skunk at the party, lol!  I really don't want to celebrate my dx anniversary day at ALL!  I wish I could just forget it all, since it was a pretty rotten, bewildering day.  Perhaps it's just too new to me yet, hasn't been quite a year yet. I may change my mind with a longer perspective.

If it were me, I'd be more likely to celebrate the CMR date. That one I could actually feel happy about.

My two cents,

Traci

P.s.  but I love Phil's song suggestions. Have him put together the dj list!

[GerryL]

I'd like to see Phil do a "Priscilla Queen of the Desert" style "I Will Survive" and put it on youtube. Would keep me entertained for hours.

[PhilB]

There speaks a man who hasn't heard me sing!  Or do I only have to lip synch?  Actually, there is an old VHS in the house somewhere with a bunch of us - including me in a white dress, curly wig and beard,  singing 'Girls just wanna have fun' but that isn't going anywhere near the internet.

[Susan61]

Hi:  Yes I have been on Gleevec since Oct of 2000. I did the clinical trial in New York City for it back then.  I have never been on any other TKI, but at the time that I was in trial, there were no other choices like everyone has now.  I was diagnosed in 1998 through a routine blood test, and back then you did shots of Interferon everyday.  There was also a drug called Ara-C, and they added that to my schedule of shots.  That one I only did 2 weeks out of the month, but on those 2 weeks when I had to do both it was brutal to say the least.   It ended up making my liver functions go through the roof, and they had to take me off of it.  I then took Hydrea for 6 months well I ran all over the place to see many transplant specialists to plan on a BMT.  I just did not want to do the BMT, and just then I heard about the Gleevec which was STI-571 well in trial before it became Gleevec.  I have to say that I did well with the exception of nausea and a lot of joint pain.  I did find that as long as I ate a substantial meal before taking my pill that I had no nausea.

I still get side effects, but looking at the whole picture of where I was and where I am now its been well worth it.

    I think its a real blessing that there is so much available now since they found out how to stop the progression of CML.  I tell everyone who is new, not to read everything they see regarding CML, because so much of the information is outdated. 

  I have welcomed so many newcomers, and I forget who I welcomed and who I missed.  IF I am late in welcoming you, then I would like to do it now.  You got into a great group here.