Last summer my hem/onc told me he was gonna cut my visits to every 6 months instead of every three months. Then, at the next visit, he spoke with me about suspicious lymph results, and I was tested for CLL. The results were negative, but I'm still on the quarterly office visits. Should I be concerned that he's watching for something else, or just monitoring the lymphs? Might he still think I have it but it's too early to determine for sure. I've mentioned here before that our communication is lacking. Maybe I should post this under CLL, but since I already have CML, thought I would start here. I realize nobody can read his mind, but just wondered if anyone has any thoughts on this?
Suspicious lab results
Started by
dede5
, Apr 16 2015 11:00 AM
11 replies to this topic
#1
dede5
-
- Members
-
- 148 posts
Advanced Member
Posted 16 April 2015 - 11:00 AM
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 
#2
Gail's
-
- Members
-
- 634 posts
Advanced Member
Posted 16 April 2015 - 01:02 PM
If you can, I would definitely get 2nd opinion & consider switching oncs. CLL is too scary to not be confident. Curious, what test did your onc do to rule out CLL?
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
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
#3
dede5
-
- Members
-
- 148 posts
Advanced Member
Posted 16 April 2015 - 02:37 PM
Gail's, I'm not great at deciphering these tests, but I think it's the one called Flow Cytometry.
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
#4
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 16 April 2015 - 04:06 PM
Lymph node swelling is normally an immune response which simply requires monitoring. If the nodes become hard and large they should be biopsied. It also depends on where they are whether they are much of a concern.
CLL would be lower on a list of possibilities. IF it were another blood cancer, lymphoma would be more likely.
Where are the enlarged lymph nodes, how many, size, feel like (hard or rubbery)?
#5
dede5
-
- Members
-
- 148 posts
Advanced Member
Posted 16 April 2015 - 08:27 PM
I don't recall him saying anything about lymph nodes. He had the test done on the basis of blood test results. Lymph level remained elevated for a few visits. I remember one of them was 6.4. Can't recall the others. I have another appt next month and I will need to ask him about that. I can't say he didn't say anything about lymph nodes, but I don't remember if he did.
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
#6
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 16 April 2015 - 09:37 PM
So it was just higher lymph counts. LYM ABS 6.4 would be a little high, but that can be several things. I would not jump to any conclusions.
#7
dede5
-
- Members
-
- 148 posts
Advanced Member
Posted 16 April 2015 - 10:24 PM
Ok. Thank you. I'll sit tight til next appt.
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
#8
Billie Murawski
-
- Members
-
- 711 posts
Advanced Member
- LocationErie,Pa
Posted 16 April 2015 - 10:26 PM
dede, call him don't put yourself through this worrying for a whole month. if I don't understand something I call my onc right away, plus you can write down your questions I would be worried too if he said lymph node and nothing else, I'd start writing my obituary again,
I've written several. Everytime an onc says one scary word it's panic time.
#9
Cathy
-
- Members
-
- 64 posts
Advanced Member
- LocationWilloughby oh
Posted 17 April 2015 - 07:36 AM
Hi dede5
I was also tested for higher Lymph for CLL and it was negative. I was sent to Cleveland Clinic for another opinion and he said they were just elevated due to the Sprycel. Mine have been a little high for about a year now. they are just watching them. I don't think you need to be overly concerned. Just my 2 cents.
I'm going on 5 years and I have never got to go longer then 3 months! Always something comes up they question so he keeps me on 3 months.
Cathy
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#10
August1
-
- Members
-
- 69 posts
Advanced Member
Posted 17 April 2015 - 08:50 AM
Hi dede5,
My oncologist has me come in every three months for CBC/CMP but we only do PCR testing every 6 months. At first I was concerned but it seems fine. I think PCR testing every 3 months results in a lot of us hanging on every uptick or downtick when trends are really more important. I am also on Sprycel and have experienced periodic blood count changes. I am sure all is OK for you.
Take care,
#11
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 17 April 2015 - 10:22 AM
Cathy mentioned the issue that Sprycel itself can cause increased lymph counts (lymphocytosis). This occurs in about 30% of patients taking Sprycel and can actually benefit the patient if that is the only cause of the lymphocytosis since it is an immune system activation similar to response against a disease. Here is some reading on the issue:
http://www.bloodjour...so-checked=true
When did you start taking Sprycel? Have you had pleural effusion (fluid around the lungs) issues? Lymphocytosis and pleural effusion can often go together.
#12
dede5
-
- Members
-
- 148 posts
Advanced Member
Posted 17 April 2015 - 11:32 AM
Thank you all for your input. It definitely gives me some different perspectives to think about.
Trey, I've been taking Sprycel for 4 years. This time last year my Lymph count was within normal range. Only started climbing in late summer and has stayed there until now. Will see about next visit. As of now, I haven't had pleural effusion. Hope to keep it that way 
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
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
