[alicat222]

PET scan results: just some tumor growth, or a lot?

by alicat222 on Fri May 26, 2017 6:34 am

Hi,

I am new to this forum and was hoping someone could help me.

My mom is 79 and was diagnosed with multiple myeloma in November. She has a tumor in her small bowel and had 2 small tumors – 1 in each kidney. They put her on dexamethasone (4 mg of 5 tablets), 1 gram bag of cyclophosphamide, and an injection of Velcade. This was happening once a week for approximately 8 weeks and then a PET scan.

Her first PET scan showed the tumor in her left kidney had disappeared and the tumor in her right one had gotten a little bit smaller and the one in her bowel stayed the same size.

She went through about 4 weeks of treatment again but then developed bronchitis, which turned into pneumonia, and she also had low sodium, dehydration and muscle weakness in her legs where her knees would buckle and she fell a few times. She ended up in the hospital and in a rehab facility for her muscle weakness.

She is home now but needs assistance with a walker and supervision still and getting rehab at home. So she missed about a month of treatment and hasn't started back until she has recovered a little more.

She recently had a PET scan though and the doctor said that there was a little growth in the tumors but didn't make it sound too concerning. However, when I read the results myself, I feel like there may be more significant growth than was mentioned. Could someone help me decipher it?

"There has been interval increase in size of soft tissue mass within the interpolar region if the right kidney containing punctate calcification, currently measuring 6.8x5.2-previously 5.0 x 3.9 cm and demonstrates intense FDG uptake with SUV max of 15.9, previously 14.9"

and

"Again seen is a large masslike soft tissue within the jejunum demonstrating intense FDG uptake with SUV max of 11.3, previously 8.7. A 3.6 cm non-FDG avid fluid attentuating lesion within the upper pole of the right kidney is unchanged from the prior and is likely a cyst. Cholelithasis is again seen. Severe atherosclerotic calcifications fo the abdominal aorta and bilateral common iliac arteries.

and

"There is a focal FDG uptake within the spinous process of T11, new from the prior study with associated callous formation likely representing a healing fracture. Left sided total knee arthroplasty and left femoral intramedullary rod." (He said this may be a slight fracture that she had and is now healing.)

He is now recommending switching her to Retoxin for treatment, but it seemed like the other treatment was working as it lessened one tumor and got rid of another. If she had not gotten sick, we wonder if it would have kept improving and if it is premature to take her off of it.

Do the changes in tumor size seem significant?

I appreciate any input or suggestions.

Thank you so much.

Alison

[Multibilly]

Re: PET scan results: just some tumor growth, or a lot?

by Multibilly on Sat May 27, 2017 9:16 am

Hi Alison,

Welcome to the forum. I'm not qualified to comment on her comparitive PET/CT results, so I will defer to her doctor or another forum member.

But from your description of your mom's tumors, it sounds like your mother has extramedullary myeloma - which can be quite difficult to treat. It also sounds like she was on what is known as CyBorD and your doctor is now considering Retoxin (sp? - I think you mean Rituxan?), which is a monoclonal antibody drug.

While Rituxan has been quite successful in treating non-Hodgkin lymphoma patients, it not widely prescribed to treat myeloma. So I'm curious why her doctor selected that particular drug for her situation and not one of the other monoclonal antibody drugs such as daratumumab or elotozumab.

May I also ask where your mother is being treated and if she is being seen by a myeloma specialist? Don't get me wrong by me asking these questions. Her doctor may have a very good reason to prescribe Rituxan, but it is a bit unusual.

I wish I could have been of more help to you.

[JinMingDao]

Re: PET scan results: just some tumor growth, or a lot?

by JinMingDao on Tue May 30, 2017 6:37 am

Hello,

First, my prayers go out to you, your mother and family. In terms of the details, I'm an engineer, not a doctor, so I can't help you there. May I ask a question: with all of the data and reports and information you're getting, what does your gut tell you to do?

I trust my team of doctors, but it's taken a while to find them and trust them. My oncologist is a multiple myeloma specialist, I have a Primary care physician, dentist and orthodontist versed in the condition, a neurologist, you get the gist. They are all pieces of the puzzle, as I call it, in managing this disease. When I don't agree with them, or don't understand, I gather info and then go with my instincts.

That's what gets me through the clinical trial info, the newness of the language if you will, and the quick translation in between memory lapses . I am the multiple myeloma patient, by the way, and I, like your mother have a terrific support system. My suggestion? Keep asking questions until you, or your gut understands.

Kim