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#1 dede5

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Posted 14 June 2015 - 02:34 PM

There is no question here, and no need for response. I just need to vent a little bit. It's that time of year again where people are doing everything outside. I'm invited to all kinds of family gatherings that are done picnic-style. The problem with that is that one of my issues with this illness and/or the treatment is being extremely sun-sensitive and heat intolerant. No matter how many times I tell people I can't do outdoor activities, they want to insist that I be there and act offended or disappointed when I don't show up. One told me recently, "I'll bring you a fan". Oh. Ok. Thanks for offering a way to stir around that 100 degree heat. Jake started about 2 months ago planning to go to a 3 Dog Night concert. It's his favorite band. It was to take place a an outdoor festival. He was insisting that I go with him. I tried to go along with it, but backed out at the last minute. He ended up taking one of our granddaughters. They came home telling me about a woman who was standing in line near them, that passed out right in the crowd. I said to him, "that could have been me". He said, "Don't think that didn't cross my mind". I like to hope he learned something from that experience. It's just not worth it to me to take a chance of passing out or getting physically sick from the heat. That's not my idea of a good time. Sometimes I just get so damn tired of the whole thing. Ok. rant over (I think)  :(


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


#2 Terran

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Posted 14 June 2015 - 04:27 PM

It's okay.

#3 Dom

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Posted 14 June 2015 - 06:10 PM

Please vent when you want. I find it easy to arrange my day so that I'm indoors in the morning and early afternoon, and outdoors after 3, 4 o'clock.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#4 pammartin

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Posted 14 June 2015 - 07:14 PM

We go to see Jimmy Buffett at least once every year in PIttsburgh, a few years ago I saw him three times in 6 days, I crossed it off my bucket list.

 

I was diagnosed in Oct of 2011, we bought the tickets for the 2012 show in Feb. and spent extra money to get pavilion seats where I could sit down and be protected from the direct sunlight and heat.  The concert was scheduled for the end of June. What we did not bank on is the people parking cars made us pull into the top lot of First Niagara Pavilion.  I tried to be happy while they were cooking burgers, setting up the canopy and decorations for the tailgate party but if I moved more than ten steps I would start running sweat and I felt like I was going to fall down.  Then when it was getting time to head down to the show I suddenly realized we were parked perhaps a half mile from the gates to the venue.  It might have been closer but as I put one foot in front of me with my head down and nearly dragging my knees on the ground I still think the sheer force of people moving kept me upright.  We got to our seats and I sat down and didn't get up for one song.  I refused to pay $5 for a bottle of water and they made you dump anything you had upon entry to the pavilion.  Also there was a 25 - 30 minute wait to get a bottle of water.  To say I was miserable would have been an understatement.  And to say my family was just as miserable is the same.  They went back and forth between trying to make me feel better and ignoring me because by then I was beyond anything but thinking of the walk back to the car.

 

Last year we bought tickets in Feb, again when they go on sale, spent the money on pavilion seats and I was all ready with my handicapped parking permit.  I ended up with the PH and I was in the hospital during the show.  I could not have attended if I had been home or wanted too.

 

Those two episodes taught me many lessons, I was disappointed, I was frustrated, and I was angry because I was tired of missing out on things for health reasons.  Unless I am feeling like I can make a trip, I don't.  I turn down invites to parties if it is hot or cold or I am not feeling good enough to go.  I still feel angry and upset at times that I cannot do what I want and when I want and my family either attends functions without me or stays home and I silently feel guilty because they are missing out.

 

We have tickets again this year for the concert.  But we bought one for me in the pavilion and close to the stage, my husband and son have seats in the lawn.  This way if we do not go, we did not spend several hundred dollars for nothing, and if I do get to go I am planning on getting some great shots for our Buffett concert memory book.  No we will not be sitting together in the beginning but as people shuffle around and move about, I am guessing it will not be long before there will be room for the guys to join me. 

 

These diseases are often horrific and have effects many people do not understand or consider.  Not long ago I told my husband if one more person tells me, 'Well, at least you look  pretty good.' I swear I am going to punch them in the mouth.

Please vent away.  And I am sorry you didn't get to go to the concert but I am glad you stayed home.  It might be a missed opportunity, but you were safe and healthy at home.  Picking and choosing what we know our bodies will or will not operate well with makes me angry.

 

Take care

 

 



#5 CallMeLucky

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Posted 14 June 2015 - 08:00 PM

I just got sunburned yesterday going rafting. It's really bad, I am in a ton of pain and can barely walk. It was fun but I am paying the price, I should have covered up. It's definitely a challenge with the meds.
I get your frustration.
Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 Dom

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Posted 14 June 2015 - 09:45 PM

Like I said, I stay indoors mostly when the sun is out, but I have to ask, because a trip to a lake is coming up. Isn't s sunblock sufficient? I bought a few bottles of spf 50.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#7 Marnie

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Posted 14 June 2015 - 10:37 PM

Wear a hat and have a long-sleeved nylon shirt available (in addition to the sunscreen).



#8 pammartin

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Posted 14 June 2015 - 10:37 PM

I have always tanned very easily, no burning just tan. from light to very dark in a few days.  With Sprycel I could not get the sun to recognize me.  What I found interesting is I did not burn, but I did not tan either. 

 

My husband has very fair skin, I believe sunscreen is one of those things not to scrimp on when it comes to cheaper versions.  It is like good sunglasses, you might get a bargain but are they protecting your eyes like a better pair would?

 

He uses sunscreen on a daily basis, his one ear last year was awful, he forgot to put it on the top of his ear and it blistered almost double.  He uses the SPF up in the 50 range and is very good and reapplying.  Even waterproof does not stay on for long periods of time.  Sweat, wiping your face with a towel, swimming, even applying bug spray dilutes the effectiveness of sun screen. 

 

My advice is to buy a better brand, not necessarily brands like Panama Jack, but with a bit of research they are out there many brands are very good.  Remembering to reapply, and check your skin on a regular basis.  You cannot always feel you are burning until you are already past the lobster stage. 



#9 pammartin

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Posted 14 June 2015 - 10:38 PM

Great ideas Marnie



#10 Lisa Lisa

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Posted 15 June 2015 - 05:49 AM

Solumbra makes light weight clothing for when you are out in the sun and need extra coverage. Look them up online and request a catalog. Pricey but worry every penny.

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#11 Dona_B

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Posted 15 June 2015 - 07:20 AM

Dede5,

I'm glad you vented. I can relate to your post and will add mine. I  cannot do heat either. Couldn't before CML and definitely can't now. I work seasonally which this time of year is at a park and involves a long hike up hill to get to the gift shop where I work. Last year, I was offered a golf cart ride up and down. This year nothing was said and I didn't ask. There was also several handicap parking spaces in the employee lot. Last year they changed at least 3-4 of them to specific full-time employees. The park hires over 2000 seasonal employees and more full-timers every year. Someone thought that there is a formula that for so many regular spaces, there has to be a handicap but maybe not because no additional handicap spaces were added to replace the ones taken away.

 

Anyway, I worked last Friday after a BMB two days prior, my third BMB. I hiked up the hill, served guests, climbed up and dusted high shelves and felt the pull at the BMB site and felt my back getting tighter and tighter. the hike down the hill was not much easier. I tried to hold my back and answer a guest's question. Then she asked if I needed help with my purse strap. I was trying to support my back.  I made it home, set down on the couch for a few minutes and when I got up felt the spasms. Thankfully the spasms waited until I got home because they are painful and debilitating. So, I put in my two week notice. Hopefully I will be able to get a ride up and back down today.

 

Like most of you, I do not look sick. I still have my hair. The weight is coming back on and on and I really wish it would stop. There is no outward evidence that I have cancer, therefore, I must be fine. I keep telling my self those one or two day weeks that I requested wouldn't have amounted to much but fear once the job is gone, it will be gone and there may not be another. At least if I worked a little, my foot would keep that door open.

 

Anyway, I am thankful to be here and thankful for my meds even though you can't tell from the above post.


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


#12 dede5

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Posted 15 June 2015 - 10:08 AM

Thank you all for your input. It always helps to know you're not alone, even though I wouldn't wish this on my worst enemy. I want to offer a reminder to protect your lips as well. In the rare instances I've had to be in the sun for any length of time, I use zinc oxide (can't remember what the updated version is called, but I bet a pharmacist could tell you). That may be a good idea for other tender places (tops of ears, etc.) as well. It doesn't look pretty, but neither do the cold sores on top of cold sores that I get if I don't use it. Pam, you obviously know exactly what I'm talking about. Dona, I know it's hard to let go of that last thread of attachment to your work world, but I took the plunge for many of the same reasons and have never had regrets. We don't look sick and nobody wants to make allowances. My biggest problem is not sunburn, because I have no intention of being exposed for that long. It is the feel of the sun and the heat on my skin and surrouding me, making me weak and sick. It's hard to describe, but I have joked that I know how Count Dracula must feel, and it's not lost on me that he also has a blood disorder  :unsure:


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


#13 dede5

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Posted 15 June 2015 - 10:11 AM

Wow 3 dog Night! eh!

Mr. Tee, that's his thing, not mine, for about 40 years. I do try to be a good wifey. My 7 year old granddaughter loved it. Who would've thought?  :lol:


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


#14 kat73

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Posted 15 June 2015 - 10:31 AM

I'll weigh in here as well.  I relate completely to dede5, pammartin and Dona_B's posts. I have become terribly intolerant of both heat and cold - it's as if my interior thermostat won't work - I have a range of about 5 degrees where I'm comfortable, so most of the time I'm freezing or incapacitated by heat.  Truly, it bothers me every day and night, and has become yet another something I have to consider.  Yes, it is such a bummer to have to do that.  Always thinking, is this activity going to lay me low, is it worth it, what is going to happen, CAN I get through it.  Never used to give these things a thought.  Even walking - my best and favorite activity - has shrunk to asking myself, is it too far?  is it too steep?  is it too hot today?  I pulled weeds with a community group the other day for a measly 2 hours in the lower 90's and humidity and when I got home I had to take a nap.  I mean I HAD to take a nap.  Also, my face gets beet red, unreasonably and certainly not something that used to happen for me.  Sometimes there's no reason at all for it to happen and someone will tell me I'm all red.  At the same time, though, I am supernaturally, cadaverously pale white.  Can't get a tan to save my life.  No color whatsoever in my face plus puffy eyes mean I look sick all the time.  This has been 6 years - worse on Gleevec first two years, but still a problem on Sprycel. Had to laugh - I had been off my Sprycel for three weeks and was home after traumatic, 6-hour surgery for mastectomy/DIEP flap reconstruction, my drains clanking around me like Jacob Marley's chains and a neighbor (who didn't know about the CML or the surgery) remarked, "Gosh, you look so pretty today - so young and bright-eyed - you look fabulous!"  Ha. ha. ha. So, I look better after major surgery than I do taking a teeny pill that wreaks cellular havoc. On the one hand, we know these things are not so terrible as side effects, but on the other hand there is a serious toll that it takes on your psyche to have to diminish, curtail or downright skip the activities and events of life that make life worth living.  A concert, a picnic, holiday festivities.  To always be the old lady who needs a seat in the shade.  People don't understand, think you're being dramatic - they give up on you and think you're just old now.  You learn to avoid things so you don't have to explain, because they never believe you anyway.  I have learned the hard way to be contented with what I have - truly contented.  But, whenever I am forced by life to interact with the world in general in some way, these clashes occur and it is, indeed, demoralizing.  Currently I am scheming and plotting some way to skip Christmas this year.  I am not kidding!  It is such a source of anxiety and fatigue, no matter how far I have cut back on everything having to do with it - and believe me, I have cut WAY back - that I really do think I could stay positive and happy all by myself if I could just treat it like any other day and completely skip it.  My husband, fortunately, is intrigued.  But still, it would be deeply shocking to most people if they heard my confession that I really don't want my kids and grandkids to visit, and I don't want to take my shoes off for the airlines and stand for an hour in line like cattle to sit in my little box on the plane in order to go see them.  Bad Grandma, that's me.  OK, enough rant.  Now you know!  I hope my fellow CMLers understand.


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.


#15 tinman1939

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Posted 15 June 2015 - 11:02 AM

I was diagnosed with CML in November 2006. I moved to Dallas from Detroit in July 2007, exchanging snow and brutal cold for drought/rain and brutal heat. I try not to let the sun and heat get to me, although it does, sometimes. But, I would rather be outdoors having fun in the glaring sun than be held hostage indoors to air conditioning, particularly during the summer months.Thank goodness for our pool. I do use sunscreen, though not as much as i should. For the golfers out there, I shot 85 Saturday, best round in a year. CML? Yeah, I have had it for more than eight years now, have never reached MMR, and feel CMLs effects (actually, the effects of the TKI I take, Iclusig) daily. But I try not to let it get me down, or stop me from doing what I want to do. F*** CML. Live strong. Have a great summer everybody.



#16 tazdad08

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Posted 15 June 2015 - 12:32 PM

I get your post. My "marriage problems" post has some simular meanings. Its not easy when people do not understand what you are going through. I am greatful that I look "healthy". I dont want pitty from everyone, i just want understanding. 


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#17 dede5

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Posted 15 June 2015 - 01:36 PM

Kat73, I can so identify, especially the last 16 lines of your post. I have always felt like family gatherings help build a solid foundation for the new generations. However, I am caught between wanting to give my 'grands' what I think they need and deserve, and wanting to just be left alone. I don't enjoy gatherings of any sort anymore, but feel it's my duty to not only attend, but most of the time, to host them. Tazdad08, I agree. I'm thankful for my life, and the good health I have in most other aspects. Believe it or not, I don't want to be seen as different, but I am. I just wish people would respect my limitations. It just increases my frustration when they cause me to have to repeat myself over and over as if they'd never heard it before. Of all the struggles we face dealing with a chronic disease, this one just shouldn't even be anywhere on this list. 


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


#18 dede5

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Posted 15 June 2015 - 01:45 PM

I was diagnosed with CML in November 2006. I moved to Dallas from Detroit in July 2007, exchanging snow and brutal cold for drought/rain and brutal heat. I try not to let the sun and heat get to me, although it does, sometimes. But, I would rather be outdoors having fun in the glaring sun than be held hostage indoors to air conditioning, particularly during the summer months.Thank goodness for our pool. I do use sunscreen, though not as much as i should. For the golfers out there, I shot 85 Saturday, best round in a year. CML? Yeah, I have had it for more than eight years now, have never reached MMR, and feel CMLs effects (actually, the effects of the TKI I take, Iclusig) daily. But I try not to let it get me down, or stop me from doing what I want to do. F*** CML. Live strong. Have a great summer everybody.

tinman, I respect and admire your perseverence and endurance. However, I do know that different people have different tolerance levels. My mother can sit in 90 degree heat with long sleeves and slacks, drinking hot coffee, and never break a sweat. If I did that, even before CML, I would've had heat stroke. That being said, I think my chief complaint is that the people who are supposed to care about me the most, live in denial and won't give me room to be who I have to be now. Actually, I do the things I really want to do, within reason. Went with my family to the beach, hit my favorite seafood places, had someone drive me as far down toward the sand as possible (in the evening of course) put my feet in the sand and let the water lap over my feet, and it was pure heaven. I do have a life. :D  Just wish people would let me decide what I can and want to do. You have a great summer as well.


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


#19 pammartin

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Posted 15 June 2015 - 05:31 PM

I love these threads. It is where we can be brutally honest, our families do not have to know, and we don't have to worry they might be hurt.

 

I swore after last Thanksgiving and Christmas I am going to visit my friend Sue in Orlando during the holiday season.  I have the biggest house, the most room, seating areas, and table/double kitchen space.  My mother in law is great but it is between she and I.  By the time we pull off the event, we are so tired we barely eat or enjoy.  I used to feel like such an ass, not wanting to host the family holiday gatherings anymore because I was too tired but I guess I got over that. 

 

This Easter we went out to eat with a group of friends.  It was the best meal I had in months.  I had no prep, no clean up, no hassle, no worries, and I only had to get my debit card out one time.

 

I guess I don't mind being an ass :D



#20 Gail's

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Posted 16 June 2015 - 02:48 PM

I took grand kids to the pool the other day. We had a great time and all wore a ton of sunblock. The baby, 22 months old, who should have the most easily sunburned skin, didn't even get pink. I burned which will have my dermatologist in an uproar. I felt hot in the face when we got home and saw that my whole face was as red as a beet. That went away when I cooled down. I've never been that red before so I assume it's gleevec sun and heat sensitivity related. So bummed because one of the best parts of summer for me is playing in the pool with my grands.
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




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