38 replies to this topic

[Widgeonus]

Get my PCR results back today. On edge as always and hoping for some good news. I hate the anxiety that leads up to finding out my results. I'll update once I have my appointment in a couple hours.

[Buzzm1]

Wishing you the best Widgeonus

[Widgeonus]

Got them back. .04 MD Anderson scale which equates to .014 IS.

Down 50% since last test.

Good day.

[gerry]

Congratulations to the both of you.

[pammartin]

Great news for you both. Congrats!

[mlk210]

What great news for both of you! Congrats

[Darlene_Jack]

Really good to hear great newshappy for you both!!

[chrissy778]

That is great news glad to hear....

[hannibellemo]

Good news!

[Gail's]

Good job! Thank goodness for these amazing meds! I got CBC results from yesterday's test. My WBC count has dropped from 96000 to 6000 in just under 4 weeks and my rbcs dropped again but not as much as prior weeks. I'm so grateful dr druker and team decided CML was worthy of drug development! My normal WBC is 7000 so I'm responding really well!

Now my little nagging worry surfaces. Is it possible for the counts to drop too fast, and does anyone know how quickly the healthy cells build back up?

[mlk210]

What great news Gail!

 

This is just my experience and obviously everyone is different.  After I started Sprycel in August, my WBC count went down to 2.7 at my lowest. They hovered in the 3's and 4's for a long time. Then I caught a cold and the big drop happen. In  my opinion it was because there wasn't enough healthy cells to fight off my sickness yet. (I'm sure there's some other real medical reason). My onc had given me one week to see if the drop was because of my cold or if I'd have to take a drug break. Luckily when I went back in a week later, I was back in the 4's. Six months out, my normal has bounced around from high 4's to high 6's. My rbc is still slightly low and has only been in normal range one time since I started treatment. 

 

There are people on the forum whose counts have dropped too low, but I'm not sure if there's a specific time frame where someone might be out of the woods so to speak for that happening.

[Gail's]

Thanks for your story mlk. I have had a cold for almost 2 weeks so you're saying that would be part of why I dropped so fast? I'm confused because I thought you produced more wbcs during illness.

[mlk210]

This is my personal thought and I'm by no means in the medical field. It's probably a ridiculous thought.  I caught the cold at month two of starting my TKI's. I think the TKI's were getting rid of my bad wbc cells and I just didn't have enough healthy ones, so my count dropped for that week.  Honestly, it's just my theory! Could have been that was my week my counts dropped low and then came back up.

[Billie Murawski]

Great News to you both.

[Trey]

Wedgy and Mr Tee walk into the plebotomy room.  A duck walks in and orders a martini.  Phlebotomist says, we don't served drinks in here.  Duck waddles out.  Mr Tee orders a PCR.  Phlebotomist says, we don't serve BCR here unless you are ABL to handle it.  Wedgy says, I am willing but not ABL.  Phebotomist says, the duck was ABL, but I was not willing.  Mr Tee and Wedgy walk out and into the bar.  Duck says, I would rather have a phebotomist in front of me than a frontal lobotomy.  Mr Tee hits a golf ball down the middle.  But he is Canadian, and it is winter, so his ball lands in the snow and is lost.  Wedgy orders a marrow PCR with a twist, but he is Un-ABL to produce adequate specimen. 

 

Further reading will not enhance your experience.  So go to the next post.

[Melanie]

Great news!

[Antilogical]

Good advice, Trey.  I followed your recommendation to the Tee -er- T.

[Billie Murawski]

It sounds like someone hasn't been to the golf course lately.

  Trey, maybe you can help calm my nerves. Ron has seen his pcp, cardiologist it will be 3 times tomorrow he's getting a nuclear stress test. His pcp put him on magnesium, told him to get bw in 2 weeks which he did they called bw was fine, 2 weeks after that pcp wanted a thyroid test which he did. Pcp called me 2 times on Friday and told me to get him an appt at the cancer center soon as possible. I didn't want to ask to many question because Ron was standing right here. Pcp said his ash was elevated and in 2 weeks his wbc went from 11,000 to 14,000  the cc treats his polycythemia he hasn't had a phlebotomy  since sept,he gets bw every month and if his hematocrit is below 50 he doesn't need one. He had a lot of bw done in the hospital if his crit was above 50 I assume they would have done a phleb. Can you think of a reason why they are concerned. It's been almost 3 years since he started getting sick. he's doing great now I'm afraid he might have something else going on now. I told pcp he has the stress test tomorrow, I just felt like he was letting me know it was urgent, when they call after hours on Friday there wasn't anything I could do until Monday. He had a blood clot in his heart which went to his lungs and there were several bc in his lungs, he also had a bc in his leg. He is on 6 different medications to control that.Oh he has an enlarged heart too. I don't understand what all this has to do with the cc. I would appreciate any input you may have.                                 Thank You Billie

[Trey]

There is no blood test factor called ASH.  If you meant AST was elevated significantly then that could be heart related since it shows muscle damage, and the heart is a muscle.  But that would be a heart specialist issue.  Otherwise if the call was related to the results of the thyroid test, that was not clear in your question.  I would need to more clearly understand the facts. 

[Gail's]

Billie, was it the TSH (thyroid stimulating hormone)? Commonly used to measure at what level the thyroid is producing the hormone that's a big part of our endocrine system. High means his body is working hard to get his thyroid to do its job. This problem is called hypothyroidism which has symptoms like dry skin, more fatigue than usual, weight gain and depression. Treatment is to give a supplement of the thyroid hormone so the body doesn't have to work so hard. Response to the medication is measured by a lowering of the TSH level.

Have you had a chance to talk to oncologist yet?