Richter syndrome - No carcinogenic nodes detected in Pet Scan

[Priss69]

Hello family.

Today I had a Pet Scan before eating the Rchop treatment. The surprise is that they did not detect any cancerous nodes and it is only detected in the biopsy. On Monday I start with chemotherapy. Did something similar happen to you?

[DriedSeaweed]

Can they biopsy again just to be sure?

[Priss69 in reply to DriedSeaweed]

14 lymph nodes of the breast were biopsied. The doctors do not find any explanation. They say that it would have to be seen in the Pet.

[DriedSeaweed in reply to Priss69]

A lot of biopsies!

Hopefully they will figure it out soon.

[Priss69 in reply to DriedSeaweed]

On Monday I start the R Chop. The worst thing is that if the Rchop works, at the end of the treatment, they will not be able to compare the Pet with the previous one, because in the first one nothing comes out. I ask him how we would know if the disease is no longer there and they told me there was no way of knowing. There is no Pet to compare before and no biopsy.

The only thing they can know if the chemo does not work, because the ganglia will start to swell.

I've been two months since I was detected and I do not have any symptoms of the disease.

[DriedSeaweed in reply to Priss69]

I can't imagine having one test positive and another negative before treatment.

Try to have an amazing weekend before the big day Monday. Any plans?

[Priss69 in reply to DriedSeaweed]

I can not cancel the chemotherapy session, but on Monday I will be called by a Spanish doctor to talk about the subject. I'm going to ask for the biopsies to try to ask for a second opinion.

[DriedSeaweed in reply to Priss69]

Yeah second opinion smart!

What I meant is that I hope you get to spend time with your family or eat some really good food this weekend since you get down to business on Monday.

[Priss69 in reply to DriedSeaweed]

Monday will be the day that changes my life. I do not know where all this is going to take me. I'm afraid that the chemo will not be effective.

[DriedSeaweed in reply to Priss69]

Sounds like you have made all the best decisions given the circumstances. Perhaps the Spanish doctor will confirm this or suggest backup plan. Hope it works!

[Priss69 in reply to DriedSeaweed]

On Monday I will tell you something

[virdieblue in reply to Priss69]

We'll be thinking about you!

Virginia

[Marie_paul]

No suv uptake ? For Cll it s low ...for Ritchers I think it should be very high .... were they completely negative ?

[Priss69 in reply to Marie_paul]

The Pet was all negative. No trace of the disease appears. The only thing that appears on the Richter is in biopsies. Is incredible.

[blowinginthewind in reply to Priss69]

This sounds a bit fanciful, but have them absolutely 100% that there hasn't been a mix up of notes, Because they happen. Ask of repeat tests if you can.

[Priss69 in reply to blowinginthewind]

the problem is that I start the R Chop on Monday. But I did ask a second opinion from another Pathologist. Send him the biopsy reports and the Pet. It's all a mystery, because the Richter survival is minimal and I mentally have been killed in life.

[blowinginthewind in reply to Priss69]

It would be helpful if they did recheck both reading - I have heard the horror story of people being treated for things they turn out not to have. I have no idea what R Chop is - I hope all goes well on Monday xx

[Priss69 in reply to blowinginthewind]

The R Chop is chemotherapy, the fear that gives me is the Richter. It is a disease that few people survive.

[blowinginthewind in reply to Priss69]

I know it can be hard to be positive - I would be scared if I had Richter; but some people do survive - and I have friends who have been given bad news about cancers and have reacted well to treatment and lived for many years. Take care and be gentle with yourself xx

[Priss69 in reply to blowinginthewind]

Thank you. I'm scared to death I have a small son and I am afraid that he will lose his mother.

[virdieblue]

If you can get a second opinion, I would do it. Are they sure the breast biopsies are CLL? It's all too strange. RCHOP is strong medicine. I would want to be VERY sure I needed to take it.

Virginia

[Priss69 in reply to virdieblue]

I asked for a second opinion, and I am waiting for another pathologist's answer, but on Monday I have a date to get the Rchop. Everything is very strange, because I have no trace of the disease in the Pet

[Smakwater]

Watching with anticipation and great expectation Priss.

Hoping the outcome produces relief and gratitude.

Jm

[Priss69 in reply to Smakwater]

I'm going to ask for the biopsies to ask for a second opinion. But anyway, I have to start chemotherapy on Monday.

[LovecuresCLL in reply to Priss69]

You can get a second opinion from another pathologist very easily . I would just have your doctor ask for one. Pathologist also can do immunohistochemical stains on tissue to confirm the impression. your doctor can ask Pathologist to get second opinion and do stains if you lack confidence in the diagnosis. You can also request your slides be sent to another center . Your insurance will cover it. I read about Richters and am in the process of getting biopsies in my skin for weird lesions . The treatments are evolving so fast and improving that I am sure there is a treatment in the armory . I read one center had 150 treatments in their leukemia center. I think it was MD Anderson. There may be a clinical trial just for that entity.

[Priss69 in reply to LovecuresCLL]

They are asking me in Barcelona the biopsies of the LLC to be able to compare them with those of the Lymphoma. The problem is I never had a biopsy of the LLC, they do not exist. It is a big problem in the absence of biopsies of the CLL and of the lymphoma, because it can not be compared.

[Smakwater]

Want the best for you, hope it goes well.

[olyocl]

I was diagnosed with Richters after the lung biopsy, then they decided they wanted a pet scan before treatment started. Have been thinking of you. Olive

[Priss69 in reply to olyocl]

Did you have spots on the Pet Scan?

[olyocl]

At the moment I feel alright, there is still scaring on my lung and I was having CT SCANS every 3 months, the results of these had been stable so at the moment they have stopped the scans. I attend haemo clinic every 3 months to have the CLL monitored. When I asked consultant if lymphoma was cured he just crossed his fingers. They didn't say much about the 2 pet scans I had (one before treatment and one after). Fatigue is a problem but hey ho it may be my age. My bed kidnaps me every morning and won't let me get out of it.

[Priss69 in reply to olyocl]

The CLL can be controlled, so do not worry. Fatigue is normal with CLL. With the Rchop has the Richter disappeared? for what you told me they did not transplant you.

[olyocl in reply to Priss69]

At my last clinic appointment they are hopeful that the Richters is cured but as I said there is still scaring on my right lung where the Lymphoma was. I am 78 and I think that is the reason they didn't consider transplant. I did ask the consultant if i need further treatment for CLL would Venetoclax be considered and he said NO.

[Priss69 in reply to olyocl]

I'm glad you're fine. On Monday I start the Rchop. I do not understand anything. My Pet goes without tumor cells. Did you get the Pet with tumor masses?

[Jm954 Administrator in reply to Priss69]

Priss, i think you are wise to continue with the RCHOP whilst you get a second opinion because if the Richter’s is confirmed it would have been a bad idea to wait. If it is not confirmed then the doctors need to discuss and come to some agreement about your treatment plan.

Have a look at this Priss, someway down it does say that PET are not always helpful in detecting Richter’s Lots of good information here: onclive.com/peer-exchange/r...

Hope you’re not feeling too bad after the chemo.

Jackie

[Priss69 in reply to Jm954]

If it is what the Pathologist has told me he will biopsy my samples again. The Barcelona Pathologist told me to continue with the chemotherapy and that he will look at the samples for future treatments.