Bendamustine + Brentuximab Vedotin

Hi Jason,

I am now home until Monday night/Tuesday morning. My chest is a lot better and breathing nearly normal. Just a bit sore and stiff in the neck area where the incisions are.

They gave me no answers as to what caused it other than possibly hitting a nerve. They did x-ray me on the table first, yes. Then I had another about an hour later in my room sat up (as much as I could), both of which were clear. Then another stood up in the x-ray department yesterday, before they sent me home. All came up clear? The saline suggestion you mentioned could be another possibility! As it is better, I assume it was an irritation of some kind! Very painful though, and nervous it will happen again, but they have assured me that they will keep an eye on my heart rate etc during the op and that if I wake up in the same amount of pain they will send me back off to remove it. 

They spent all day yesterday trying to find a surgeon willing to fit my Hickman under general. (The Doppler showed a PICC is a no go as my veins are only 1mm thick!!) The Hickman team told me that they usually send patients to another hospital for this to be done as they don't offer that there, so it must have taken some persuading! The only day there is a list for this is Tuesday, so they are going to ring me Monday afternoon and let me know my time slot. If it's in the morning, then I will have to go back Monday night, if the afternoon then I can go in Tuesday morning. They have saved my room so there is definitely a bed. Handy as I could leave my things there! 

I completely forgot to ask when conditioning would start, but I am assuming Wednesday if all goes well Tuesday. 

I will post a picture of my initial regime below. It looks as though I have a whole days rest before my cells, rather than just 24 hours. 

I am very pleased to see you have your plan in place now too. Only a few weeks to go before you can get this final bit done and dusted!! And a few weeks to enjoy some time with your family before it all starts. Will be interested to hear how it goes for you. Here's hoping for some snow days for you guys ;-)

Have a lovely weekend everyone and thank you for all the virtual hugs :-)

Xx

The only change will be the dates and an NG tube from day -7 !

Xx

Hello HopefulMummy,

 I’m just checking to see how you are doing today and over the weekend. I’m glad that you have your full schedule now. I hope that everything goes well with your Hickman placement. Will you have anyone (partner, parents, in-laws) with you for the procedure to help assist you? Also, given the food snafu last time, can you bring any food (meals or snacks) with you in case you end up just with toast again?

I’m in week 2 of my BV cycle, and like clockwork, the joint and muscle pain have returned to my shoulders, elbows, wrists, and fingers. It has gradually been building over the last several days so that now it is constant and intense and limiting me to only a couple hours of sleep at a time. I eventually gave in and took an oxycodone last evening (my oncologist prescribed it for this purpose back when I was having the same pain on B&B) and finally got some relief although it has mostly worn off now. 

Take care. I’m wishing you a pain free placement with no complications. 

Hi!

I'm all good today thank you (unless I have to sneeze!!).

The hospital called to tell me that I am to have my Hickman fitted this Thursday now! So a couple more nights at home before I return Wednesday afternoon. They were apparently keen to start conditioning Thursday but have decided to wait until Friday to allow we to recover from the general. My Dad always accompanies me to hospital, so IIwill have someone there. We do joke that we are running out of things to talk about now though...! :-) Yes, I think I will pack extra snacks! I am bound to be starving after another day of fasting.

Really sorry to hear you are in pain again! And take all the oxycodone you need to help you through. There's no medal for bravery here! (Or that's what my nurses like to tell me anyway!!) Just think though, this should be the last time it happens!! Woohoo!! 

Xx

Man ((hugs)) Jason........ I used to go on a ‘trip’ when I had to take Tranadol

I had a radiology appointment yesterday afternoon. They did their simulation to help figure out how to deliver the doses of radiation. I got a non-fasting ct scan of my chest as part of the process. My biggest worry is that it will detect that the cancer is already coming back. I haven’t heard any results from the scan yet and probably won’t unless they find something. 

I’ll be getting 15 days of radiation starting on the 19th, a week from yesterday.

My muscles and joints from my shoulders to my fingers are still in pain, and I can’t sleep. The good news is that I can have another oxy now and I’ll be able to sleep after it takes effect.

How are you doing? Are you able to breathe normally? Does coughing still hurt? One more day until they put in your Hickman, right? Take it easy, get plenty of rest and light exercise. Good luck to you!

Hi Jason,

So glad you have a date. How are you feeling about the radiotherapy? 

I think being nervous about the CT is very normal, though on the other hand, you will more than likely walk away from it feeling assured that the cancer is still gone! I would ask at the next appointment/call your CNS about it to help settle your mind?

When you wrote, I was in less pain, yes. I had my new Hickman fitted yesterday which went well though. I am very sore this morning. They are thinking of starting BEAM today, but said I will see the doctors during the ward round first. I am slightly concerned about being crappy with chemo combined with the pain (hurts to even lift my head!). Thankfully, it's not the chest pain like last time!

I hope the oxy is still working a bit for you and that your pain is less today 

Xx

I’m glad that the Huffman insertion went well this time. I remember that my chest and neck were tender after the procedure. They got better after a few days, but it took a week or two before they were “normal”. 

Did you start beam today?  If so, how did it go?  How was it using the Hickman?

The radiologist gave me a scare yesterday and dialed my scanxiety to 11. Around 5:05 he called me. I missed the call, but he left a message for me to call him back. My immediate thought was that he wanted to discuss my ct scan results. I tried to call him back, but the clinic closed at 5, so I couldn’t reach him.

I’m normally good about not worrying when there is nothing that can be done, but I didn’t do well last night. It didn’t help that after I finished BEACOPP last summer we combined my pet scan with the simulation and I got bad results that there were new lymph nodes and that the main tumor was still there. So unfortunately, I was preconditioned to expect bad news from him.  

I eventually reached him this morning. They need to redo the simulation with my arms at my side instead of above my head. I asked, and the ct scan was clean. So, all of that worrying was for nothing, thank goodness. 

Take care HopefulMummy. I hope that the beam goes well with minimal side effects. I’ll be thinking of you each day and sending you big gentle hugs. 

I have an update from my radiology appointment.

They changed two things with the new simulation. They had my arms down, instead of over my head. They also fitted a face mask so that they can radiate my neck where I had lymphoma in my lymph nodes. The mask will guarantee that my face is in the same position each time, and will help avoid things such as my salivary glands. 

My radiologist showed me the images from today’s ct scan. There was no sign of cancer. There is a fair amount of scar tissue from my old mediastinal mass. 

I will start treatment on Monday, February 25th. There will be 15 treatments over 3 weeks. They will do a pet scan no earlier than 8 weeks after I finish the radiation. 

My shoulder/elbow/wrist joint pain and arm muscle pain is still pretty bad. On average I’m taking oxycodone every 5-6 hours. This morning I counted pills left in the bottle and realized that I’ll run out during the weekend. I called my oncologist to get a refill, but he redirected me to my sct specialist since I’ve been seeing him the last two months instead of my oncologist. So I called the specialist and he decided to give me a different medication, gabapentin. This treats nerve related pain including peripheral neuropathy. It may be a placebo effect, but my fingers do feel marginally less tingly and less painful. Unfortunately it didn’t help with my joint and muscle pain, so after 10 hours I broke down and took another oxycodone. Hopefully more doses of gabapentin will become more effective with my joint and muscle pain, I can ration the oxycodone over the weekend, or the pain will go away on its own as more time passes since I received BV. 

HopefulMummy, how was your night in your isolation room? Do you have adequate help from the nurses? Did the nurses let you sleep through the night, or did they wake you regularly to poke and prod you? How is the food?  Were you able to sleep ok with the Hickman? Did you have B yet?  If so, how did you tolerate it?

 I’m thinking of you, and wishing everything goes well. Take care. I’m sending you lots of gentle hugs. 

Hi,

Yes had carmustine ('B') yesterday. Not feeling too bad today so far and have had some toast for breakfast. It was fairly uneventful having it, other than my pulse went a bit high so they stopped for a bit and waited for it to settle. Hickman is less sore today too. Haven't had any painkillers yet!

It's nice being in the room on my own, I am allowed out at the moment so the door is open at times. Luckily, the nurses said that as my blood pressure etc had been fine all day, the could leave me from 10-6am without checking, so managed some sleep which was amazing after only an hour or two since being here! 

Food is crap as expected haha but I'm guessing i will go off it soon anyway. They wanted to put in an NG tube yesterday but there were a few emergencies so I think they are planning to today instead. At least I will have something in my belly I guess once I do go off food!

Really pleased to see that 'The Call' you had was in fact good news. You must feel great knowing you are still in remission!! I hope it all goes ok for you too.

I'll update if/when I can and look forward to reading how u r getting on too :-)

Xx