8 week check up

[Gradyboy]

Had an 8 week check up at Herbert Herman Cancer Center today. Doc says I'm doing excellent. He ordered a PET scan a month after my final Gazyva infusion 3/20. Is this normal procedure for those on O&V 12 month course? I though I wouldn't have any more scary test until the end of treatment. On bright side he changed my blood draws from weekly to monthly after final infusion.

[Shepherd777]

Changing your blood draws from weekly to monthly is a good sign. If you have not had a PET scan they will do this for a base line to see how much the internal lymph nodes have shrunk with the OV treatment at the end of treatment. Also, a monthly blood draw following you through the 12 months is not unusual as the Venetoclax can drop your numbers very fast wherein they give you a break or reduce the mg dose to slow things down and to get some of the numbers back up a bit.

[Gradyboy in reply to Shepherd777]

I had one before treatment started, this one will be six months into treatment one month after my last infusion. I will be surprised if my insurance approved it.

[Big_Dee in reply to Gradyboy]

Hello Gradyboy

I had PET scan after CT scan indicated massive bulky nodes and possible Richther's Transformation. Result was negative but started V&O one week after PET scan. Not knowing your ALC rate, your insurer would doubt you need PET scan, not routinely done. Blessings.

[Mldeterm]

We push back on unnecessary radiation. I'd ask why then and not at the end of treatment. Our specialist just felt the nodes manually and could tell my husband was responding well.

[Flute117]

Since I had so many internal nodes that were not palpable, I had PET scans every six months for a while — before, during, and after treatment. I had some other suspected issues (possible sarcoidosis among others) which is why PET scans were done vs more common CT scans. My commercial insurance at the time covered them all.

[Poodle2]

I had a baseline CT scan before I started V+O, no scans once O finished. I would question why it is needed if things are going well. Perhaps at the end would make more sense?

[Gradyboy]

I had many internal nodes and large speed. I think he just wants to check them out and make sure things are going as well on the inside as the outside. I will talk to him more about this though.

[Poodle2 in reply to Gradyboy]

My spleen was enormous (21cm ? I don't even remember now, over 20cm) and you should have seen my nodes... I mean a good consultant can palpate them and tell you with almost a mm precision (I know mine could certainly tell when they were enlarged by just a few mm and I did not feel anything there), they should not need a scan for that but see what they say.

[Pearlpink]

I’m having ultrasound of spleen as spleen still feels enlarged, but much smaller, after my obinutuzumab infusions just finished. I imagine you are having PET scan because they want to see your internal nodes like you said. Mines being done because my spleen increase initially was too rapid and so I think they scan if they want to make sure any anomalies disappeared. Initially they did a PET scan prior to treatment to rule out splenic lymphoma so I guess they are still cautious with me. I feel relieved they are assessing my spleen as it hasn’t gone down as much as I expected.

[Gradyboy in reply to Pearlpink]

Good luck with your US. I'm sure they just want to see how my internal nodes and spleen are responding also. It is scary though. You never know what they will find.

[Gradyboy in reply to Pearlpink]

How did your US go? How is your spleen? I was just reading back on these old post and came across this.

[flipperj]

I had a PET scan scheduled after a year of Venetoclax. I declined it and they reluctantly agreed to a MRI which my insurance covered. The staff tried to make a claim the PET is standard of care for routine monitoring but I called them out on it. PET scans are only warranted for CLL in the case of suspected Richters or other acute situations by most guidelines. It was an uncomfortable discussion but it’s my body and the risk of secondary cancer due to radiation is not insignificant. CLL is a long haul for the majority of us and it’s prudent to minimize our radiation exposure. The CLL specialist I consulted with agreed.

[Pearlpink]

Hi! I think it has gone down loads! But interestingly they couldn’t see the whole of it with the ultrasound! Apparently it’s shrunk massively but the part behind my ribs is hard to assess!

I was so shocked it had shrunk so much - but thrilled! I didn’t think to put it online as I was a bit confused on the day about whether they had been able to measure it! Weirdly, in the week before he scan I felt like I was getting my rib cage and waist back so it must have been my spleen shrinking!

The ultrasound people recommended that I have it checked in the CT scan I have as a check at the end of my treatment, as they said it would be more accurate on CT! But they said it had shrunk massively!

I’ve definitely noticed a big difference over the last month!

Exciting!

[Gradyboy in reply to Pearlpink]

That's great news. My spleen has me wondering too. I still feel like I can feel it. I finished my Gazyva infusions 3 weeks ago. I guess I will see soon. I get a CT in a couple weeks.

[Pearlpink]

that’s exactly how I felt! And then suddenly it reduced! Good luck!