Jump to content


Photo

Hey how about haveing a sound off. That we can use to say how our day been going for us

sound off about my day

  • Please log in to reply
19 replies to this topic

#1 tammielee

tammielee

    Member

  • Members
  • PipPip
  • 17 posts

Posted 22 October 2015 - 03:28 AM

Like this today as been fair. My muscles hurt in my rt. leg. along with stabbing in my rt. hip. The coolest thing I saw was the falling of the leaves and all fall colors. there just beautiful.



#2 amcantley

amcantley

    Member

  • Members
  • PipPip
  • 13 posts
  • LocationSanford, Florida

Posted 22 October 2015 - 07:08 AM

I'm experiencing more good days than bad. Yesterday I went for a walk (ended up taking a long nap afterwards). I went to my daughter's bowling meet and then to work. I was tired but it was a successful day.



#3 blueheron

blueheron

    Advanced Member

  • Members
  • PipPipPip
  • 33 posts

Posted 22 October 2015 - 08:24 AM

I'm feeling strangely good today, started on B complex vitamins two days ago and I think they may be kicking in! It's really noticable.


DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet


#4 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 22 October 2015 - 01:11 PM

Sleepy, tired day today but know I'll feel much better once I'm out and about enjoying the fall colors and views of the mountain here in Portland, OR!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#5 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 22 October 2015 - 07:33 PM

What a fun thread you started, Tammielee!  Good job!

 

Woke up, went to work, worked, thought about retiring - but didn't.  I enjoyed the company of my co-workers.  I did NOT enjoy the cooler weather.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#6 dede5

dede5

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts

Posted 22 October 2015 - 07:56 PM

I'm having more than usual amount of fatigue this week. Other than that, everything's about the same as usual. Love this time of year. In reading some of the stories on here, if those are the worst issues I have, then how can I complain. Very much appreciate each time I wake up to see another day.  :D


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#7 tiredblood

tiredblood

    Advanced Member

  • Members
  • PipPipPip
  • 474 posts

Posted 22 October 2015 - 08:00 PM

Feel mostly good today. Joint pains at intervals that come and go with no rhyme or reason. My Tasigna rash is going away, but I stopped taking it on 10/12, but that is a story for another thread.  I guess since the rash was the first to occur, it should be the first to go.  Had a good day at work.



#8 Dona_B

Dona_B

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts

Posted 22 October 2015 - 11:15 PM

Great day here. I love Fall and the last two years I wasn't able to get out and enjoy the trees. This evening was a walk in the woods just before sunset. Although I still get a little out of breath and fell behind on the hills, it beat  the last couple years of enjoying from the house and car. A friend had grilled out in the park and shared their supper with us. It was great being outside and talking as day faded into night.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#9 tammielee

tammielee

    Member

  • Members
  • PipPip
  • 17 posts

Posted 23 October 2015 - 01:09 AM

well, I've been feeling like crap. just all over yuck past week or so. Today I went to Dr. And I think I confused to shit out of him. My labs are a mess. I been on spryle for 2 months now. wbc were 6.9 last month. Now 11.6.  New med on hold until dr. get cancer cell numbers back.

             I also love fall. I sat out side late in the night with the back porch light on. It was so quite. Every once in awhile I'd hear this chrunkly sound. I looked around. then I finally saw this leave was like in slow motion curling up just a little then do the other side. It was weird but cool at the same time. I was like the net flicks nature in motion thing. Well good night 



#10 tammielee

tammielee

    Member

  • Members
  • PipPip
  • 17 posts

Posted 23 October 2015 - 02:59 PM

I slept great. I caught up on my potassium like dr said to do. take 2  20 meq potassium every 6 hour for 24 hours. I hope to be feeling better.

 

 

Hey dede5  that's whats this thread is about saying how you feel don't compare your self to others. I know how I feel most of the  time is kind of shity. But I've realized people ask how I'm doing or feeling, So, what do I say back. IT's good, Great. We just give them the answer they want to here. So we don't have to explain ourselves to them. Then Grocery store lady ask you how are you. Some days I'm dragging ass just to walk threw the store for milk. I just want to tell that smiling lady. I feel like hell came up and stomped the shit out of me!! Now please just hurry up so I can pay for this and get home.  

Here Is what I hope for in this thread say how u feel and think about your /our cml and not to judge each other.  we do understand each other. More than we realize sometimes.



#11 amcantley

amcantley

    Member

  • Members
  • PipPip
  • 13 posts
  • LocationSanford, Florida

Posted 24 October 2015 - 04:42 PM

Yesterday, was a rough day full of exhaustion. I canceled two appointments and took the dog and cat to the vet. After that I called it a day. Today however, I have been full of energy and am just now starting to get a little tired. I'm enjoying reading all the posts about Fall changes. In Florida our changes are more subtle but I can feel a change in the air and see a slight change in foliage. My husband hasn't had to mow the grass in a few weeks, that is the biggest change around here.



#12 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 25 October 2015 - 03:41 PM

Feeling happy today that I made it through Light the Night walk for LLS last night. Huge crowd, maybe 4 or5 thousand and a beautiful clear night in Portland. Our lanterns looked so beautiful and the fireworks display was awesome! I carried 2 lanterns, yellow as remembrance of my mom who had non-Hodgkin's lymphoma, and white to represent my CML. Masses of red lanterns for those who support us. In the Portland area alone half a million $ raised!
Down side. So tired today after 12 hours of sleep! I've been working to build stamina but obviously not hard enough! Thankfully, no sore muscles, but just whooped today!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#13 cleocans

cleocans

    Advanced Member

  • Members
  • PipPipPip
  • 34 posts

Posted 25 October 2015 - 04:17 PM

Had to say goodbye to our 15.5 year old dog on Friday.  It was very tough.  I finally got some decent sleep last night.  Feeling better today.



#14 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 26 October 2015 - 02:35 AM

I am sorry Cleocans.  That is one of my hardest choices I have ever had to make.  I have six dogs and two are over 12, I worry constantly about their decline, it is easy to see if I do not pretend blindness to their state.  They are such a part of the family, when one leaves it is the loss of a family member, at least in my house.  I am glad you found rest and are feeling better.  One of the hardest choices we make is when we bring a pet into our house is the knowledge they will not be with us nearly as long as we want. 

 

That being said, I do have a Russian Tortoise that will probably outlive my youngest nephew who just turned 1 a month ago.  I am going to have to will him to someone, I doubt he will miss me, especially if his new caregiver feeds him red leaf lettuce.  He was supposed to eat a host of plants and be very easy to care for.  He is a picky eater and poops on my hand as soon as I handle him while cleaning his enclosure.  I am convinced he holds that poo knowing the weekly cleaning is happening.  I am outsmarted by a tortoise.  I am not proud of that.

 

As to the day, I have a constant mouse infux because the back side of the house (very old) has not basement, there is no way to stop the critters from entering the house.  I tore off the front of our fireplace after hearing definite signs of another infestation.  Now the critters have lost their home as well as being eradicated, but there is a problem with the chimney pipe and no one around here has anything that will match up to the original set up.  I am thinking of hanging white plastic over the 2x4 frame adding white mini lights under the plastic and greenery tacked here and there for the Christmas season.  Everything looks better with white mini lights, doesn't it?  Of course it is located center point in our living room.  I am not my husband's favorite person last week, thinking my rating will not be much better this week. 

 

Today is Monday, I am already wondering what I am going to tear apart this week that will take a year or more to fix.  I have a nice dinner planned for this evening, hoping I can fill Bob's belly enough and ply him with adult beverages he forgets the gaping hole your eyes are immediately drawn too upon entering the living room.

 

I am sure this is going to be a continued story..



#15 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 27 October 2015 - 11:44 PM

Cleo, I'm so very sorry about your dog. It just tears your heart out. It's been 2 years since we had to put our little Annie to sleep and I still keep breaking down. The only comforting thing is we have the choice to take their pain away, while humans don't have that option. I guess we should feel lucky that we had such a wonderful pet for so long, but somehow it doesn't help. My heart goes out to you.

                                                                                           Billie



#16 surfdaisy76

surfdaisy76

    Member

  • Members
  • PipPip
  • 20 posts
  • LocationSouthern California

Posted 29 October 2015 - 01:08 PM

Well, today really sucks!  Been having a tough couple of weeks with side effects kicking my butt a bit.  Been feeling like I have the flu most days.  Burning up one minute then freezing the next!  Haven't had that before.

 

First, to cleocans, my deepest sympathy on the loss of your beloved pet.  I have been through that several times and in fact Oct 19 was the one-year anniversary of the last "friend" I had to say goodbye to.  I know how painful it is.

 

So, I've been feeling crappy, then driving home from work last night, the timing belt in my car broke...NOT GOOD!  I realize I'm whining here, but as I was waiting for the tow truck, I just couldn't help feeling sorry for myself!!!  Really??  Cancer and very expensive damage to my car or having to just get a new car right now??  2015 has been a very rough year for many reasons (except of course, my wonderful grandson). :-)

 

I know I will get my feet back under me, but I was wondering, how do all of you deal with feeling overwhelmed with all of the other crap that comes along in life, while dealing with the CML too?



#17 Melanie

Melanie

    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 29 October 2015 - 10:57 PM

Determined to live more in the moment since dx 4.5 yrs ago, I was blessed to spend a few days with my adult daughters (both live in different parts of the US) in Cancun with no children or spouses... Just us. I can't even remember ever even having just lunch with them alone since they were little girls, so this time together was very special and needless to say memorable forever.

Shortly before we left, I had received test results that showed l lost CyCR and had new undefined abnormalities in my chromosomes, but we're retesting to verify that in November. I didn't tell my daughters about these results...didn't want to worry them and just have fun together. Make memories!

Well, a couple days after returning home, I came down with the chills and a fever of 102. Was incredibly fatigued, and had diarrhea. Hadn't felt that bad since being in hospital with a 105 fever and was pumped so full of antibiotics that I ended up with C diff before they told me I also had CML and CMV. This illness brought those memories back and it really scared my husband and I, thinking that maybe I was progressing, especially in view of the latest test results.

Called my Onc, had several labs done, some disgusting that I won't go into detail about. Slept for 36 hours and fever finally broke. Labs came back with nothing to indicate progression and cultures that have come back so far show no toxins. Feeling better every day, on an antibiotic, and Doc feels like it might have been some unknown parasite I picked up in Mexico, even though I was extremely careful when I was there.

It's nice to be able to share the fears with people that understand. In hindsight, I probably shouldn't have gone to Mexico and taken chances with a compromised immune system.... But I also wouldn't change my trip. I refuse to live in fear. I'm still going to live in the moment, enjoy the things that really matter and make memories.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#18 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 30 October 2015 - 11:05 AM

Great story - I went through it with you, word for word!  I repeat, as often as necessary:  "Mirth, with thee I mean to live" - (Milton, L'Allegro). 


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#19 dede5

dede5

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts

Posted 30 October 2015 - 11:58 AM

how do all of you deal with feeling overwhelmed with all of the other crap that comes along in life, while dealing with the CML too?

Surfdaisy76, The overwhelmed feeling began before I was dx, and is still with me. I took an antidepressant for about 6 months, and didn't like the way it made me feel, so stopped. I just try to stay as low key as possible, and don't let things get to me. Unfortunately, overwhelmed is something I just had to learn to live with. Wish I could tell you something different. Maybe someone else can.

 

But I also wouldn't change my trip. I refuse to live in fear. I'm still going to live in the moment, enjoy the things that really matter and make memories.

 

mbrown2010, I'm in total agreement. Couldn't have said it better!


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#20 JPD

JPD

    Advanced Member

  • Members
  • PipPipPip
  • 258 posts

Posted 30 October 2015 - 12:23 PM

Im at .85 on the PCR and getting ready to go through a divorce and lose my insurance.  So it goes.

 

Take the pills, live your life.  As Hendrix said https://www.youtube....h?v=JFFPjHxq7iY


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users