Jump to content


Photo

New Here and Newly Diagnosed with CML


  • Please log in to reply
32 replies to this topic

#1 MsLaLa

MsLaLa

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationFlorida

Posted 11 September 2015 - 12:11 AM

I am new here and I was diagnosed with CML a couple weeks ago. I will be starting Sprycel and would like to know how this medication has worked for others. What has it been like living with CML?
­čî║MsLaLa

#2 chriskuo

chriskuo

    Advanced Member

  • Members
  • PipPipPip
  • 367 posts

Posted 11 September 2015 - 12:54 AM

Sprycel has worked well for many people, either after using Gleevec or as an initial drug.  Many people tolerate Sprycel better than Gleevec.  The most common serious side effect is pleural effusion.  It does not affect the majority but it is a significant reason why people cannot use Sprycel long-term.

 

Many people have a good response and the side effects become tolerable over time.  If side effects continue to be a serious problem or the response does not meet guidelines, there are other options to the initial drug.  Fatigue is a common side effect which often becomes more tolerable over time but you may need to adjust your schedule until you determine the best way to deal with it.



#3 Rice

Rice

    Member

  • Members
  • PipPip
  • 14 posts
  • LocationWashington

Posted 11 September 2015 - 03:12 PM

I was diagnosed back in May and have been on Sprycel 100mg for about three and a half months now. Fatigue and trouble sleeping have been my biggest issues, but I don't feel as if they're very debilitating especially considering everything else that COULD happen. At 3 months on Sprycel my blood counts were nearly normal except for low platelets (likely caused by Sprycel). I've learned so much about CML since diagnosis and I still have much to learn. The nice thing about that is the boards here are very active and they're plenty of knowledgeable people that can relate and won't hesitate to help you out as you go through this.


Diagnosed: May 15, 2015 (383k WBC - Chronic Phase)
Treatment: Sprycel 100mg (May 29, 2015 - Present)
CHR: June 2015
CCyR: October 2015
MMR: April 2016

PCR
10/20/15 - 0.83% (MD Anderson Cancer Center)
1/20/16 - 0.13% (Seattle Cancer Care alliance)
4/18/16 - 0.04% (SCCA) Drug break 4/15-4/21 for surgery
7/13/16 - <0.01% (SCCA)


#4 kat73

kat73

    Advanced Member

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

Posted 11 September 2015 - 03:52 PM

MsLaLa - Wecome to our world.  I've been on Sprycel for over 4 years and it has been much easier for me than Gleevec was. My only real complaints are fatigue and puffy eyes - I think that's pretty standard for all the TKI's (although I'm not sure about the puffy eyes.)  I have recently gotten to the "undetectable" level, on Sprycel, so for me that was about six years total.  Some people are much faster than that; and a few are struggling to get anywhere near that. 

 

I don't know how to bring up links and computer stuff like that, but the overall most helpful source for educating yourself would be Trey's blog here on the LLS site.  He has compounded about a million answers to questions we all have had into an alphabetized, easy-to-read format.  Someone better at computers than I am can provide the link here, but I think if you just Google 'Trey's CML blog' you'd probably find it.  Good luck to you - keep posting!


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.


#5 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 11 September 2015 - 07:06 PM

This is a good place to start:

 

http://treyscml.blogspot.com/


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 MsLaLa

MsLaLa

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationFlorida

Posted 11 September 2015 - 09:52 PM

Thanks. I will definitely be checking out this this board regularly.
­čî║MsLaLa

#7 tiredblood

tiredblood

    Advanced Member

  • Members
  • PipPipPip
  • 474 posts

Posted 12 September 2015 - 10:01 PM

Welcome to the board, MsLaLa.  Sorry to hear of your CML diagnosis.  

 

Just some random thoughts.....

Early on after being diagnosed, I had to remind myself not to be anxious while waiting for blood test results.  For me it takes about a week to get PCR results, so I had to get my mind on other things while waiting.  For me the main thing that lacked, being newly diagnosed with CML, was having others to talk to who have the same diagnosis.  This discussion board is great.  I'd still like to know more local people with CML though.



#8 Dona_B

Dona_B

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts

Posted 15 September 2015 - 02:47 PM

Hi MsLaLa and welcome to the forum. I have been on Sprycel since my diagnosis, in January of 2014. I noticed hair loss at first but it has settled down. My hair seems drier and straighter. In the fall I seem to lose more but that happened  regularly before diagnosis. The side effect that bugs me the most is back spasms. It seems I'm in the minority with that side effect. Not every one has the same ones. Green tea does not seem to agree with me anymore. I used to drink it regularly before diagnosis.

 

I seem to be a little more tired than before. The theory of the spoons describes this and other chronic illness accurately. If you haven't heard of it, you can google it. There is also a femine issue that I won't go into but it has been discussed in other threads.

 

CML does bring changes but thanks to the development of Gleevac in approximately 2002, the outlook for CML patients is much better.


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 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 15 September 2015 - 06:27 PM

Can you tell us a little about your diagnosis such as your blood count levels that led to your diagnosis (White blood cell count, other symptoms). Did they take a FISH test (% Leukemic cells under the microscope), bone marrow exam? Did they diagnose you in "chronic phase"?

 

What dose Sprycel are you taking?

 

Answers to these questions will help guide answers that others will post.

 

The good news is that you are very likely to respond to treatment which will bring your CML under control. A Dona_B wrote above - much progress has been made in the treatment of CML.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 SkippyRN

SkippyRN

    New Member

  • Members
  • Pip
  • 6 posts

Posted 15 September 2015 - 08:44 PM

Hi! I have just been diagnosed with CML. The confirmation came on 8/26 but the issue was discovered on 8/22. My initial WBC's were 278 K. Today my WBC's are 5.1 K and I have only been on Gleevec for a little over 2 weeks. I have had the joy of going through many side effects (rash, pins & needles sensation, body aches, joint aches, dizzy spells) but they are all seeming to subside thankfully. Now,I am learning to accept the diagnosis which is made even more challenging by the fact that I am Bipolar Type 2. I have been working hard not to get sucked into the bottomless pit that I know is depression. I am managing to hang on. I am scared to go back to work, which is scheduled for Saturday, because I am not sure how I am going to respond to the emotional and stress aspect of my job. I am a pediatric/PICU RN and one of our primary populations is oncology kids. 

 

My timing with the diagnosis seems to be immaculate since my Pediatric/PICU department is right in the middle of fundraising for the Light the Night Walk in October. This has really brought it home for them since we are the ones who treat Leukemia, we don't get Leukemia. But my managers and co-workers and family and friends have been amazingly supportive. I just seem to not know how I should feel. Many days I wonder if I am actually accepting all of this or if I am just in denial. My psychologist reminds me that I will have ups and downs from this and I am in a bit of a downer. I guess I am the point of looking for support from others with the diagnosis. That is where I am now.

 

Anyway, thanks for listening (or reading) and Hi!



#11 MsLaLa

MsLaLa

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationFlorida

Posted 15 September 2015 - 09:27 PM

SkippyRN I hope all goes well. We were diagnosed around the same time. I will literally be starting Sprycel tomorrow when the shipment comes, I pray I have few to no side effects.
­čî║MsLaLa

#12 MsLaLa

MsLaLa

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationFlorida

Posted 15 September 2015 - 09:33 PM

I was supposed to be having a procedure done when the dr told me my WBC was very high (over 300) and they weren't going through with the procedure. Instead they admitted me and did a bone biopsy and that they suspected CML. Later that week when I followed up with the Hematologist/Oncologist is when he confirmed the diagnosis.
­čî║MsLaLa

#13 mlk210

mlk210

    Advanced Member

  • Members
  • PipPipPip
  • 158 posts
  • LocationIllinois

Posted 15 September 2015 - 10:05 PM

SkippyRN and MsLaLa  - I struggled with the emotional side when I was diagnosed. I could barely talk about the future with my husband because I was scared I didn't have one. I turned to this forum a lot for assurance that what my onc told me was true. They all told me it takes time and that's the truth. I'm a year out and I'm so much better now. I used to be watching the clock until I had to take my pill, but now my alarm goes off on my phone and I'm like oh yeah. It still crosses my mind most days, but I'm not fixated on it anymore.

 

MsLaLa- I take 100mg Sprycel. My side effects have been minor after the headaches the first week. Most have lessoned over time.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#14 SkippyRN

SkippyRN

    New Member

  • Members
  • Pip
  • 6 posts

Posted 15 September 2015 - 10:25 PM

MsLaLa I understand. I originally was seen for what we though could be heart issues but my heart checked out fine. After going home I found out about the high WBCs. I was admitted got my BMB done the next day then sent home the the day after that. I was lucky because I treat kids with Leukemia so I was already familiar with most of what was going on. My hospital room turned out to be 2 doors down from the department where I work, so I visited there often when I got bored. I literally had our pediatrician at my bedside within 10 minutes of me arriving in my hospital bed and had lots of visitors throughout the stay. I still laugh at the Monday morning when I walked over to my manager's office pushing my IV pole to fill him in on the situation. They have all been supportive and patient. 

 

I was able to start my Gleevec right away because the pharmacy called other related pharmacies to find it and then a co-worker made sure that the prescription was transferred to the 24 hr pharmacy so that I could get it that night. I have been a little shocked at how quickly my counts have dropped and am now a little concerned that they may go below norm before I go back to work which would further delay me returning to work. I can't take care of sick kids if I am immunocompromised so I will get another blood test on Friday.



#15 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 15 September 2015 - 10:31 PM

MsLaLa I understand. I originally was seen for what we though could be heart issues but my heart checked out fine. After going home I found out about the high WBCs. I was admitted got my BMB done the next day then sent home the the day after that. I was lucky because I treat kids with Leukemia so I was already familiar with most of what was going on. My hospital room turned out to be 2 doors down from the department where I work, so I visited there often when I got bored. I literally had our pediatrician at my bedside within 10 minutes of me arriving in my hospital bed and had lots of visitors throughout the stay. I still laugh at the Monday morning when I walked over to my manager's office pushing my IV pole to fill him in on the situation. They have all been supportive and patient. 

 

I was able to start my Gleevec right away because the pharmacy called other related pharmacies to find it and then a co-worker made sure that the prescription was transferred to the 24 hr pharmacy so that I could get it that night. I have been a little shocked at how quickly my counts have dropped and am now a little concerned that they may go below norm before I go back to work which would further delay me returning to work. I can't take care of sick kids if I am immunocompromised so I will get another blood test on Friday.

 

With a moniker of Skippy, just wondering if you're an Aussie?



#16 SkippyRN

SkippyRN

    New Member

  • Members
  • Pip
  • 6 posts

Posted 15 September 2015 - 11:03 PM

No, I am a Skipper. Born that way. My last name is Skipper so got used to the nickname Skippy pretty quick. I even have friends who have me in their address book as Skippy Skipper. Actually is Laura Skipper.



#17 kat73

kat73

    Advanced Member

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

Posted 16 September 2015 - 09:59 AM

Skippy - I am struck by your query about not knowing what to feel.  At this point you're probably numb with shock, even if you don't know it.  I'm sure your psychologist would counsel you to just let yourself feel anything and everything for awhile.  Sort it out later.  And yes, get ready for your perspective changing often in the months ahead. The very best piece of news that you have right now is your spectacular plummet down to a normal WBC in two weeks on Gleevec - that is a dramatic and best case scenario response.  It means the drug is working.  That usually bodes well for long-term success.  I'm glad you're surrounded by experts - medical (starting with yourself) and emotional, as well as colleagues, friends and family.

 

Only one caution, and I hesitate to add it, but because you're bipolar, here goes.  You won't find much in the literature on Gleevec and depression, but there is a small cohort who have reported it.  I became depressed on Gleevec and couldn't get on top of it (at full dose) for two years, so I switched to Sprycel and felt tons better.  This is very unscientific, as time and therapy could've been the main causes of pulling out of it.  I guess all I'm saying is, be aware that if you feel worse than you've been doing, it COULD be - COULD be - the Gleevec.  I just want to save you the self-blame and despair, that's all.


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.


#18 SkippyRN

SkippyRN

    New Member

  • Members
  • Pip
  • 6 posts

Posted 16 September 2015 - 10:40 AM

Thanks for the input. I was aware of the risk for depression just from the the diagnosis which is why I contacted my psychologist when I was on my way home from the hospital. Because of the Bipolar, I am very in tune with how I am feeling and signs to watch for indicating depression or the reverse, mania. This is what is making the diagnosis of CML so confounding. For the most part i have been feeling fine but have recently been feeling more depressed symptoms. But I am concerned about knowing if I am actually processing the new diagnosis or just denying it. it may be that I am just impatient but considering I am going back to work in the hospital on Saturday I need to make sure i am in a stable place. I can't afford a big breakdown i the middle of my shift at the hospital. My Heme/Onc doctor and I had checked drug interactions when I started the Gleevec so that is not a concern. We discussed the depression side effect since mood swings are something I am concerned with and she mentioned the depression but it is truly hard to distinguish if the depression is from the Gleevec or the entire situation of the diagnosis of CML and the starting the Gleevec. It is an extreme life situation. You can see I have done the research and am usually pretty aware of what is going on emotionally and mood wise which is what makes this difficult that I am unsure of how I am handling this .



#19 kat73

kat73

    Advanced Member

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

Posted 16 September 2015 - 10:53 AM

Skippy - I wonder if your therapist could squeeze you in for a quick session before Saturday, just to specifically address your fear of breaking down at work?  I am so unqualified to comment, but from my own experience, I catch the whiff of ye olde catastrophic thinking sneaking in, perhaps?  Maybe if she can't, you can go through your own mental checklist?  Also, perhaps it's an unrealistic expectation to be very stable going in - I think you will be what you feel on that day, and you will deal as best you can with what you've got.  And, I'd bet that that will be plenty good enough.  Please excuse all this if I've read your situation wrong - I mean only to help, but it's a risky business, words.


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.


#20 MsLaLa

MsLaLa

    Member

  • Members
  • PipPip
  • 25 posts
  • LocationFlorida

Posted 16 September 2015 - 12:11 PM

I have anxiety and depression which I was doing well until recently. I started seeing a therapist and he increased the dosage on my meds. But still feeling crappy.
­čî║MsLaLa




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users