Bendamustine + Brentuximab Vedotin

I have good news to share. My pet/ct came back negative. The scan was moved up to an earlier date, but my appointment with the sct specialist wasn’t rescheduled, so it isn’t until early next week, so I haven’t had a formal discussion of the results with my team yet. However I did get a copy of the interpretation and have discussed it in detail with my aunt who is a retired radiologist. 

The results show that the pet/ct could not detect any active (live) cancer cells, but there is still a shrinking mass of dead cancer cells that have not been reabsorbed by my body yet. My oncologist previously mentioned that this is possible if the scan is done too early. Moving the scan up several days didn’t help in this respect. 

I do have a few specific results that I can share. Here are the suvmax values from my September and December scans. 

Liver (baseline): 4.1 —> 4.0 

Main mediastinal mass: 5.8 —> 3.6 

Left sternoclavicular joint: 11.8 —> 3.5 

Right sternoclavicular joint: 10.6 —> 3.4 

The scan also showed that there were no enlarged or hypermetabolic lymph nodes, and no new signs of disease. 

This Friday I will have a bone marrow biopsy to help confirm these results. 

The last couple days have been an emotional roller coaster. 

Hoping everyone is feeling well. 

Brilliant news Jason! Over the moon for you!

Xx

Hi Jason,

excellent news! So very pleased for you!

onwards and upwards now.....

hugs xxx

The last two days have been an adventure. 

On Friday I had a full day of tests. My first appointment started at 8:30 and my last one ended at 4. I had an echo and ekg, a pulmonary function test, a meeting with a social worker, blood draws for lab work, and a bone marrow biopsy. 

I have an appointment on Wednesday to go over all of these results as well as my pet/ct results. 

The echo and ekg went well. The pulmonary function test, not so much. My pet/ct had shown that I have small bilateral pleural effusions (fluid near the lungs), and bibasilar atelectasis (small parts of my lung that are involved in deep breathing have collapsed). In general these should heal themselves over time once I’m more active and breathing more deeply. Any way, these made the pulmonary function test very hard to perform, since I would cough a lot. I don’t have the final results, but my lung function is about 50% of what it should be for a healthy male of my age. 

For the lab work, they drew 15 vials of blood for a variety of tests. I don’t know what all of the tests were but a bunch of them were to see if I had various signs of infection from specific diseases, such as hepatitis. 

This was my first bone marrow biopsy. I managed to avoid one when I was initially diagnosed and staged because the pet scan showed that my tumor had passed through my mediastinum so it would have gotten into the bone marrow there. For whatever reason, they had to go in at two places. One for the fluid, another for the marrow. 

That brings me to Saturday. Around 4 I started feeling very cold and could not get warm. I started monitoring my temperature and after about an hour it had gone up to 101.5. I called my clinic since I’m supposed to report any fever over 100.4. After 10 minutes the on call doctor called me back. After a short discussion he said that I should go to the ER (this may be a US term, it stands for emergency room). So I went and spent 4 hours there. I was dehydrated so they gave me fluids. They did blood draws from my port and arm to culture for infection (results will take a few days). They ran a CBC and my numbers were good, I’m not neutropenic, but am still anemic and have mildly low platelets. They also did a swab of my nose (waiting for results) and a chest xray to check for early signs of pneumonia (lungs were clear). They also checked the site of the bone marrow biopsy and there was no sign of infection. In the meantime, my fever went back down so they eventually sent me home. I may be simply getting the cold that the rest of my family had a couple weeks ago. 

Anyway, that was my big adventure. I’m hoping that tomorrow is restful and uneventful. 

HopefulMummy, your pet is this week on the 19th, right? Wishing you good luck and good results. I have my fingers crossed for you. 

Hoping that everyone is doing well. 

Oh Jason, what we all have to go through to improve this living thing we all want to do, but yes let the next few days be less eventful but you are in this for the long run.

I also had issues with my pulmonary tests as I have Asbestosis issues but my team accepted this to be an acceptable risk for going forward for SCT.

Have you been given a date for you to starting BEAM yet?

Hi Jason, 

really hope things resolve without too much trouble for you, pesky family passing on their cold....but you did totally the right thing in getting checked out!

higs xxx

Hi Jason

What an adventure! Sorry you were unwell, I hope it wasn't the start of a cold??! I'm glad all tests went as smoothly as possible, though the lung function wasn't too good :-( I haven't had any of those tests yet! Dont think my lung one will be too good either being an ex-smoker!

It's taken me a while to reply - been busy here with school Christmas things and have been enjoying a bit of normality, though it's pretty tiring!

Yes, my scan is tomorrow (19th)! Eeek! Have to wake up super early to get some breakfast in or I will be shaking all the way through the hospital!! Results appointment Thursday afternoon so not long to wait! We are going to take the children to the city the hospital is in and do some Christmassy things before the appointment - bit of ice skating, Santa's grotto etc so should be a good day if we get good news at the end of it too!! My CNS has said she will call in the morning if it is good news so we don't have to go to the appointment (as we know what the plan is if so!)

I have come round a bit quicker this time without the Bend. I have had pretty shaky hands up until today though, has made the twice daily clexane injections fun...!

Hope all has been well with you this week and you haven't had any more ER adventures!

Xx

HopefulMummy, how did your pet scan go? When do you get your results?

My wife’s brother arrived from China on Tuesday. He’s been very helpful already and is giving my wife a much needed break. He’ll be here until January 30th. 

I had my appointment with my sct specialist on Wednesday. He officially said that I’m in remission but that it is likely that I’ll relapse in 6 months without an sct. 

All of my tests came back good with one exception. My pulmonary function test (pft) was around 50%. At that value they will need to adjust the dosage of one of the beam drugs (I think it’s cytarabine). He’s ordered another pft for Friday to confirm the results. I spent a lot of time in bed the last few weeks due to muscle pain, which has finally worn off and I’ve finally been active again. So I’m hoping that my lung function has improved. If the new results are good enough they can give me the full dose, if the new results are really bad, then I might not be able to do the sct. If they are in between, then they will adjust the dosage. Fingers and toes crossed. 

Speaking of toes, and on a more icky note, one of my big toenails started to fall off tonight. Call me old fashioned, call me a traditionalist, but I firmly believe that toenails belong firmly on toes, that’s just the way that I was raised. 

There is just an eighth of an inch of nail holding it in place, and it’s breaking off at the base, so when it goes I will lose the whole toenail. It doesn’t hurt and it isn’t bleeding. This likely started back many months ago when I was on BEACOPP and the whole nail became bruised and a little warped, so I imagine that I have a new nail that is sufficiently grown underneath, but I wasn’t able to see behind the old nail. For now we wrapped it in a bandage to keep it from snagging on something. I have some appointments tomorrow and I’ll see if they can schedule someone to look at it. 

One other piece of news, they did a vein check today and decided that I will need a central line inserted before they collect my stem cells. My first potential collection day is Boxing Day (we don’t celebrate it here, and I wasn’t familiar with it, but I’ve seen it mentioned on the forum so I had to google it, and now feel obligated to use the term), normally they would install the line one day before collection, but that’s Christmas Day, so they are doing it an extra day early. So I’m having minor surgery on Christmas Eve. Call me old fashioned, call me a traditionalist, but I like to celebrate my religious holidays without surgery, that’s just the way that I was raised. Anyway the line will have 3 lumens, and apparently all three need to be flushed with heparin on a daily basis. They actually prescribed heparin and we’ll be doing this ourselves at home. (My wife always complains that I use the word “we” when there is an unpleasant task, such as putting a bandage over a toenail, that I don’t want to do and that she ends up having to do. I think of it as me giving her moral support, but somehow she doesn’t see it that way). Speaking of which, we also have to give me growth factor shots starting Sunday for 3 days. 

Here is my schedule

12/20: 2 hour class on what to expect with sct and mostly information on caregiving, 1 hour meeting with the pharmacist to go over all the chemo drugs that I’ll be getting. They might also discuss the heparin and growth factor shots (but we did already get some training on that today). 

12/21: Pulmonary function test

12/23 - 12/25: We self inject growth factor 

12/24: Surgery to insert central line 

12/26 - 12/27: Potential stem cell collection days

1/4 - 1/9: High dose beam chemo (outpatient)

1/9: Hospital admission 

1/10: Stem cell transplant — starts at least 24 hours after completing last dose of chemo

I’ve read the post on melphalan and have confirmed that the infusion area has ice chips and popsicles. I even got a partial list of flavors. In addition, the chemo nurse that I talked to was familiar with this, so I feel that I’m in good hands. 

I hope that everyone is enjoying the holidays. 

Hi Jason

I am so glad things are moving along for you! And it must be lovely for your wife to have her brother around.

My scan went as it should - thought the radiologist hinted that my chest had lit up and not to hold the baby too close :-( the results appointment is at 3pm (6 hours from now!) so I guess I will find out how much is there, whether it's anywhere else and what the plan moving forward will be...

Saying this - I felt amazing yesterday! Even drove myself on the 4hr round trip and had a walk around the shops on the way home while I was 'avoiding' the children until the tracer had worn down enough. Unfortunately, as soon as I got home I started to feel cold and my temperature rose. I also had a 'fun' adventure in A&E(/ER!) last night. Argghhhhh. I got there at 9pm after my temp went up to 38.2. While I was there it went as high as 38.8! They gave me fluids as my pulse is high (it has been 115-125 all week), and some preventative antibiotics while they waited for blood results. They came back all clear - they are actually all really good, HB 117, Platelets 197, WBC 4.1 and Neuts 3.4! No sign of infection from urine test or chest x-ray, no inflammation marker, nothing. So they gave me some paracetamol and after arguing with my Haematology ward in the other hospital on the phone (embarrassing!) they sent me home. My temp went down to 37.2 before I left, but is up a bit again this morning. 37.9. They've just said to take paracetamol and speak with my consultant at the results appointment today! I finally got home at 4.30am and am so pooped today! I'm pretty upset as we were going to take the kids for a day out but I really can't manage the drive (my other half doesn't drive and it's 2hours away!), or trust myself that I will be 'ok' for the whole day. I do wonder if you can get a temperature from overdoing it??? I had been up since 4am so I could have breakfast and didn't get home until 6pm. Or if the PET radio tracer .lcould cause it... Feel ok other than tired and warm today. A nap is on the cards before later I think! 

Sorry, went on a bit there, I thought of you on my way there as we seem to have got a temp around the same time in the cycle/after the PET????

Ahhhhhhhhhh just as I am typing my consultant has called - all clear?????!!!!!! Woooooooo!!! Complete response - not a dot!!! Yey!!!!! 

Might've just had a big blub 

Xxxx

This is amazing news!!! Congratulations!!! What great news to recieve, just before Christmas too.

I hope you have a huge celebration today

Helen x