33 replies to this topic

[scuba]

What is a CCyR? Is that the number that should be in the negative?

 

CCyR is Complete Cytogenetic Remission.

 

It means that when they look under the microscope with a special "dye" that only shows CML cells, those cells are visible. They count them as a percentage of undyed cells (FISH test). so if you have 2 cells out of 100 that the dye shows up - you are 2%. When they look under the microscope and they see zero cells that fluoresce, you have reached complete cytogenetic remission. Zero FISH.

 

Zero FISH = CCyR is a major milestone. People who reach CCyR have little chance of disease progression. In fact, FISH = zero is more a prognosticator of long term success than any other measure.

[Gail's]

Scuba, would it be useful then to ask for a FISH now and then in addition to pcr? I'm wondering if it would be more of an indication where you're at.

[scuba]

Scuba, would it be useful then to ask for a FISH now and then in addition to pcr? I'm wondering if it would be more of an indication where you're at.

 

FISH is generally used to diagnose CML and later to monitor initial progress of treatment. Many patients diagnosed with CML start out with FISH = 100% (all cells under the microscope show CML). Over time this percentage should drop as treatment progresses. Once FISH gets to zero, PCR (molecular test) takes over as the preferred test for residual disease.  FISH = zero is the threshold for cytogenetic remission or CCyR as mentioned above. You should be having FISH tests taken until you reach this point. PCR at this time should also be dropping below 1%.

 

Your Oncologist should be following the NCCN guidelines for CML treatment if he is not a researcher in the field:

 

http://www.nccn.org/...l/index.html#16(page 16 describes the tests).

[kat73]

rnowinski - Great responses all, above, for you.  Two things to add here:  If you rely on a transplant expert doctor, he could very likely steer you in that direction.  A transplant doctor is NOT what we mean when we say, "find a CML expert."

 

Two, check out Trey's blog:  treyscml.blogspot.com.  (I hope I got that right - if not, just Google "Trey's CML blog."  Anyway, readreadread about CML.  Your oncologist is really not informing you of ANYTHING you need to know. 

[scuba]

The NCCN guidelines (National Comprehensive Cancer Network) is an excellent resource for newly diagnosed CML patients (and for the rest of us as well to refer back to from time to time).

 

http://www.nccn.org/...guidelines/cml/

 

It should be required reading .... especially for doctors who treat CML patients that don't otherwise know what they are doing!

[amcantley]

amcantley: Is your pain in both legs or just one? Mine is just in one leg which is why my doc doesn't think it related to Sprycel

My pain has primarily been in both legs. I agree with the other post participants in that you may want to seek a second opinion. Good Luck!

[Dabel]

My mother, 85 was diagnosed with CML this year and is on Sprycel.  Her blood tests show a very good response.  She was initally on a 100 dose, had a bout with pneumonia, went to 70, 50, and now back on 70.  She has regularly indicated she feels "headachey" (sort of pressure above her eyes, in the area of her nose)  which Tylenorl normally clears up.  She wonders if this is an effect of Sprycel.  (Many other causes have been ruled out).  Every couple of weeks she also has a fever with chills, but then it generally goes away within a day or two)..  She is very concerned about pneumonia and is taking her temperature muliple times each day.

 

Do any of you have these side effects?  From reading your posts, it seems that her side effects are pretty low impact.

 

Who and where are the best specialists for CML?  She lives in Florida during the winter and Pennsylvania during the summer.

 

Also, do any of you have more brittle bones now?  Of course she is 85 but some minor twists have turned into "cracks"  or fractures in the last year.  It could have a lot more to do with her age and osteoporosis.

 

Do any of you also have polycythemia vera?

 

I'd like to be helpful to her, and especially raise her spirits.

 

Debby

 

[chriskuo]

The best CML specialists are generally at academic medical centers.  Is she near a medical school in either state?

[scuba]

My mother, 85 was diagnosed with CML this year and is on Sprycel.  Her blood tests show a very good response.  She was initally on a 100 dose, had a bout with pneumonia, went to 70, 50, and now back on 70.  She has regularly indicated she feels "headachey" (sort of pressure above her eyes, in the area of her nose)  which Tylenorl normally clears up.  She wonders if this is an effect of Sprycel.  (Many other causes have been ruled out).  Every couple of weeks she also has a fever with chills, but then it generally goes away within a day or two)..  She is very concerned about pneumonia and is taking her temperature muliple times each day.

 

Do any of you have these side effects?  From reading your posts, it seems that her side effects are pretty low impact.

 

Who and where are the best specialists for CML?  She lives in Florida during the winter and Pennsylvania during the summer.

 

Also, do any of you have more brittle bones now?  Of course she is 85 but some minor twists have turned into "cracks"  or fractures in the last year.  It could have a lot more to do with her age and osteoporosis.

 

Do any of you also have polycythemia vera?

 

I'd like to be helpful to her, and especially raise her spirits.

 

Debby

 

Hi Debby,

 

Headaches and Sprycel go together - but there is a way to minimize or eliminate them that worked for me very well. 

 

First - your mom should never use Tylenol. Tylenol is hard on the liver and interferes with Sprycel (in the liver). Advil/Ibuprofin would be a better pain reliever. 

 

I use to use Advil in the old days for headaches, but found that Curcumin worked wonders in this area (2 grams is sufficient). Once I started taking Curcumin, no more headaches (Sprycel or no Sprycel). Curcumin is natural and good for the liver. 

 

For brittle bones (Osteoporosis) - this is an issue of Calcium not depositing where it should. Intake of vitamin K2 (also known by MK-7 or menaquinone) can dramatically improve bone density. It is important that K2 (180mcg) be taken with a vitamin D (as D3) supplement as the two work together. Vitamin K2 works to transport Calcium out of soft tissue (like arteries and organs) and deposit it in bone. Taking Calcium supplements is unnecessary and even dangerous unless there is a calcium deficiency condition. Osteoporosis is a condition of poor calcium deposition not supply. 

 

http://www.ncbi.nlm....pubmed/18690918

www.ssjournals.com/index.php/ijpr/article/view/1250/1244

 

Vitamin K2 occurs naturally in fermented foods such as Japanese Natto (acquired taste!). And not surprisingly - 

Japanese women have the lowest rates of osteoporosis in the world.

 

p.s. I take vitamin K2 for arterial health as it helps prevent hardening of the arteries. It does the same thing as in women to help move calcium out of soft tissue (arteries) and place it in bone.

[Billie Murawski]

Hi RN, I hope you aren't still hurting by the time you read this. Kat reminded me of 2 episodes I had with my sciatica,it is miserable and it lasts a long time my last episode was about 5 years ago. The pain started in my butt cheek and went all the way down the back of my leg and the only thing that helped me was walking and stretching day and night It had nothing to do with cml or a tki or old age, it's something that just comes out of the blue (mine lasted 2 months) and then just goes away. My pcp told me to take ibuprofin, I don't like to take pain pills. After it's gone you go to church every day and light a candle and pray that it never comes back.

                                                                                                              Good Luck Billie

[p.a.m.]

Hi Eveyone,

I've been on Sprycel for about 9 months. Started out on 100 mg but had multiple finger infections, surgery and severe blood infection and ended up in hospital and 4 months of antibiotics so I requested my dose be lowered to 50 mg. I still have bone pain and muscle pain. My right leg is especially bad along with my ankles, hands, wrists and elbows. Extremely tender to the touch. (I also was on gleevec for 7 yrs and had horrible muscle spasms (more like an alien was inside my right leg tearing it in opposite directions) nothing helped, I tried tonic water, cal mag, mag supplements). These meds can and do affect a persons anxiety level also. Wishing everyone health and wellness.

[rnowinski]

FISH is generally used to diagnose CML and later to monitor initial progress of treatment. Many patients diagnosed with CML start out with FISH = 100% (all cells under the microscope show CML). Over time this percentage should drop as treatment progresses. Once FISH gets to zero, PCR (molecular test) takes over as the preferred test for residual disease.  FISH = zero is the threshold for cytogenetic remission or CCyR as mentioned above. You should be having FISH tests taken until you reach this point. PCR at this time should also be dropping below 1%.

 

Your Oncologist should be following the NCCN guidelines for CML treatment if he is not a researcher in the field:

 

http://www.nccn.org/...l/index.html#16(page 16 describes the tests).

Thanks for the link....it was very helpful!!

[rnowinski]

Hi RN, I hope you aren't still hurting by the time you read this. Kat reminded me of 2 episodes I had with my sciatica,it is miserable and it lasts a long time my last episode was about 5 years ago. The pain started in my butt cheek and went all the way down the back of my leg and the only thing that helped me was walking and stretching day and night It had nothing to do with cml or a tki or old age, it's something that just comes out of the blue (mine lasted 2 months) and then just goes away. My pcp told me to take ibuprofin, I don't like to take pain pills. After it's gone you go to church every day and light a candle and pray that it never comes back.

                                                                                                              Good Luck Billie

thanks for the post. I went to an orthopedic last week. The MRI actually showed swelling/water on both legs and only a little arthritis in the hip joint. So I had shots in the hip yesterday. That has helped the pain, but the muscle around the top part of the leg still is having spasms. Both docs feel that this is a combination of meds and leg anatomy. The question now is if I can live with the situation or try something else. Hopefully in a couple of weeks things will now drastically improve. They ruled out sciatica since the pain is at the top front of the leg. FUN FUN FUN......good luck to you too!

[CallMeLucky]

Your Onc doesn't sound like a good fit. Find another one for a second opinion and I would suggest not the one your current one has been working with. You need to go in a different direction and see how it goes. You should see a cml specialist not a transplant specialist. A transplant specialist will want to give you a transplant. Most people with cml do not need a transplant.
Sprycel can cause pain. Unfortunately it is something we have to deal with. Don't ignore it, keep getting checked out but give it some time and it will likely settle down