Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Bendamustine + Brentuximab Vedotin

BadgersFan
Posted by

Moomy,

My work has been very flexible about things. In general we don’t have strict working hours as long as we are getting our work done, and my management has been very supportive. I’m a software engineer so work isn’t physically demanding. I’m largely paid to think. Luckily I have seemed to avoid chemo brain, knock on wood. Right now I’m usually working from around 11 to 6 

I’ve been trying to take a small walk each day once or twice around my neighborhood, and I have found that that helps with my fatigue quite a bit.

I don’t have any treatments planned. I’ll have my pet scan in the middle of May, and we’ll see what the results are.

We are excited about my trip. My dad is anxious for me to come.

HopefulMummy,

That’s great that your energy has been coming back and that you’ve been able to cook, feeding the baby, etc. I’m impressed that you aren’t taking daytime naps anymore, although those will probably come back once you start radiation. I still get some napping in during the weekend. 

How did your first radiation treatment go? I found that they were very easy compared to chemo. The appointments were very short and on time, and there were significantly fewer side effects. I live only 15 minutes away from my facility, so the travel was very easy, and I drove myself to all of them. I can’t imagine doing a 3 hour plus round trip drive each day. I imagine that that will get old very quickly. 

Did they have you use a device to control your breathing? They did that for me because it shifts the position of the heart so that it will get less radiation. I also had a mask that they used to hold my head in the same place, but this was because I was getting treatment to my neck  

I’m not a woman, but it sounds like you are describing hot flashes (that’s what they call them here in the U.S., anyway) and those are very common in menopause. 

My understanding is that they do the simulation as part of the CT scan, so that appointment was probably a simulation without you knowing it. During the simulation they give you the tattoos and create a thing for you to lay in that is formed to your body.

When they do the treatment, they will line up your tattoos and then they will do a very fast CT scan. The machine compares the position of some landmarks (organs?) against your original CT scan and then adjusts things to offset any difference ms in your your position  

Take care.

-- Jason - BadgersFan --

BadgersFan
Posted by

HopefulMummy,

How are you doing with your radiation treatments? I hope that they are going well and that you have minimal side effects. 

I’m visiting my family in the Midwest. My dad fell and broke his hip earlier this year, so he is mostly wheelchair bound. I have been able to spend some quality time with him and my brother and his family. 

Happy Easter and Passover everyone!

-- Jason - BadgersFan --

HopefulMummy123
Posted by

Hey Jason,

Sorry for the very late reply!!

Happy Easter to you too - I hope you had a great holiday. We had a lovely time here and the children ate way too much chocolate!

I am glad you had a nice time visiting your family! My Nan broke her hip a few years ago and it takes a lot to get back on your feet, the hospital told her to get walking the day after surgery! 

Radiotherapy is going well, I have now had 10 of 15 sessions. I don't have a mask or anything monitoring my breathing, just a headrest and foot rest and don't have to hold my breath - I asked about the heart shifting thing (sooo not the technical way to explain it!) and I was just told that there are two different types of radiotherapy and I was having the other one?? I also have a gel sheet (bolus?) that goes on top of my chest.They say this brings the radiation closer to the surface of my chest as it adds an extra layer - like very thick skin. 

I'm quite tired now, though I've felt worse! And I am also getting a bit of indigestion at night (which mixed with night sweats is no fun!) but not too much to go now! My brain seems to be working on reduced capacity too - but whether the forgetfulness, lack of concentration etc is from the radiotherapy fatigue, transplant or menapause (or most likely all three!) I sure hope it goes back to normal soon!

How have you been feeling? 

Xx

HopefulMummy123 x

Sparky_1975
Posted by

Hi Nikki,

So sorry to hear about Randy. I haven't been on here for ages and was very sad when I read your updates. 

Nothing can ever take away the pain and hurt of loss but I hope you have gained some peace of mind in knowing your poor husband is not suffering.

Sorry again I was away.  

Mum still battling awa and at moment thankfully doing okish.

If anything I can do you know where I am.

God bless.

Sparky

BadgersFan
Posted by

Hello HopefulMummy,

It’s been awhile since I’ve been on the website. How are you doing?  You must have completed your radiation a few weeks ago.  I’ll bet that you are glad to be done with the daily appointments.  Have the side effects gotten better? How is your energy and recovery from your sct?

 I’ve been back at work since early April, although I managed to catch a cold two weeks ago, so I’ve been working from home since then. I was supposed to have a pet scan on Friday, but I postponed that a week due to my cold. Apparently a current or recent cold can give false positives in a pet scan, plus you have to lay still for 30 minutes without coughing or blowing/wiping your nose. Hopefully I’ll be better by next Friday. I’ll give them a call midweek and see if we need to postpone again based on my current symptoms. 

Starting 2 - 3 months ago I started losing hair again. At first I lost them on the back of my hand, then my wrist, the outer (but not inner) side of my legs, chest, and now facial hair on my neck. I’m really hoping it doesn’t affect the hair on my head or my eyebrows or eyelashes. I don’t think that I’ve mentioned it before but after I finished BEACOPP I lost all of the hair on my body, every single hair. My aunt, a retired radiologist, warned me about these subsequent waves of hair loss. Basically the new hair that grows back has a shorter lifetime than normal hair and because the hair all starts growing at the same time it all dies at roughly the same time. This affect can apparently last for many cycles over several years before the hair lifetime gets back to normal and the hair falls out more staggered so that you don’t lose all of your hair in one area at the same time. Has anyone else had this happen to them?

I’m hoping that you are all doing well. 

-- Jason - BadgersFan --

HopefulMummy123
Posted by

Great to hear from you Jason!

I am okay thank you. Yes, finished Radiotherapy at the beginning of the month! Minimal side effects though the fatigue was getting quite strong near the end. It's still effecting me a bit and I can just suddenly feel completely  wiped out and need to rest. I also have darker, itchier skin where they targeted (a lovely verticle rectangle between my boobs ha) which is annoying but healing and not a big problem. 

I thought your scan was coming up! A good idea to postpone with your cold. The last thing you need is the worry of false positives!! Has your temperature been ok? How is your chest with it since having radiotherapy there too?

I don't have an answer to the hair loss you are experiencing - mine has just slowly returned and at different speeds in different places! For example, I now have an even (very short) fluffy covering on my head, but my leg hair is sparse and my eyebrows haven't needed plucking for months (they've held on all the way through!). As I am a few weeks behind you finishing treatment, I guess I'd have to wait and see and let you know if I experience the same!

Xx

HopefulMummy123 x

BadgersFan
Posted by

Hello HopefulMummy,

 I have my scan tomorrow morning. I made the mistake of taking a nap this afternoon and now I can’t sleep. I still have a lingering cough, but otherwise I feel well. I talked to the nurse again a couple days ago and we debated whether to postpone another week. She talked to my radiologist and he thought that at this point the risk of a false positive was minor, so I’m going ahead with it. 

When is your next scan?

I’m glad that the radiation side effects weren’t that bad for you. Compared to chemo, I found the radiation to be a breeze, aside from the fact that it was daily. Even that was a blessing, in retrospect, since it only took a few weeks to finish the whole process. I remember having slightly itchy skin at my radiation site and by the end my skin was slightly darker, like it had gotten a few hours of sun. Aside from my throat, there was no pain. Like you, I had fatigue, but I seemed to get over it after a couple weeks  

How are you doing doing recovering from your sct? Are you starting to get back to your old routine?

I’m glad that you managed to keep your eyebrows and eyelashes. As a guy it is acceptable to be completely bald (or shave your head) so that didn’t stand out too much except that I had no eyebrows or eyelashes. The really annoying thing though was that up until 4 days before my son’s graduation last June, my head hair had only thinned slightly. Then with 4 days to go it came out in clumps in the shower and I had to shave the rest off. I had waited 18 years for him to graduate and my hair couldn’t wait four more lousy days :(.

My hair started coming out awhile ago, in either February or early March. While I ahead of you with respect to the B&B it was only by a couple weeks, at most. So if you haven’t lost new hair, maybe you won’t.

Besides my continuing hair loss, I’ve noticed that my skin seems more fragile. I had my trifusion central line removed about a week before I started radiation, and it had healed up nicely with the skin being just a little darker there. A couple weeks ago I scratched that skin and it completely opened up and started bleeding (just a little blood and it clotted nicely and formed a good scab — so my platelets still work) but light scratching normally won’t break the skin like that. I also started wearing a watch recently with a built in heart rate monitor and my skin became a little itchy and developed a mild rash. So something weird is going on with my skin. I’m assuming that it is a delayed side effect from the chemo, similar to what is going on with my hair cells. I’ll ask tomorrow at my appointment. 

Speaking of which, I’m getting my port flushed tomorrow morning and blood tests. There have been recent measles outbreaks near here, so I requested a titre to test if I still have immunity to the measles. I’m old enough that I likely only got one shot as a child (in the US they only gave one shot until around 1989 when they decided that two were needed for sustained immunity). Even if I did get the second shot, who knows if the chemo killed off that immunity. Any, I asked my oncologist to order the test and he agreed, so I’m getting that tested tomorrow, too. 

Well, I’m pretty much rambling now and I should probably try to get to sleep. By tomorrow at noon (my time) I should have preliminary results from my scan. Hopefully it will be good news. 

Have a good day. :)

-- Jason - BadgersFan --

BadgersFan
Posted by

I got the preliminary results from my radiologist. My pet scan was negative. There was no sign of metabolic activity relative to my liver. I’ll get the formal results next week. 

Take care everyone. 

-- Jason - BadgersFan --

moomy
Posted by

Hey Jason, 

terrific news! 

Hugs xxx

Moomy

HopefulMummy123
Posted by

That's BRILLIANT NEWS!!! Worth the lost sleep too I bet!!

Re measles - I hope the vaccination is ok for you with no ill effects! I'm not having my MMR until month 24 which means my baby has to wait too as it is live - we will be relying on herd immunity until she is about 2 1/2. Luckily, we don't need childcare for her so she will be mostly at home until then, and only around her brother and sister/their close friends/other family, all of which have been vaccinated until then. 

I went for my first 3 month checkup with the transplant team earlier this week - all seems well and as it should be. I asked about when my scan will be and he told me that I won't have one as I went in to the transplant with a CR (clear scan December - transplant 2 months later in February.) I plan to get in touch with my CNS about this as she, my haem consultant and the radiologist have all referred to my end of treatment scan, so I am not entirely sure if I should have one or not. 

Hope everyone has a lovely weekend - extra celebrations for you Jason - still smiling from your news!

Xx

HopefulMummy123 x

HopefulMummy123
Posted by

Oh and what did they say about your skin? And will you be getting your port removed soon? 

(Sorry - tried to remember everything you had written but my memory is awful at the moment...!)

Xx

HopefulMummy123 x

moomy
Posted by

When you do eventually get the MMR, if it’s around 2 years post SCT, expect maybe to get some of the high temps, similar to the actual diseases but not other symptoms. Though daughter did end up with a bit of a sore jaw towards the end of the week of raised temps. But that was after an allo ACT purely because she was working in a measles hot spot at the time. 

Hugs xxx

Moomy

markyflem
Posted by

Hi Guys,

Well dome Jason with regards to the negative scan. Waiting for the results is always a stressful time. With regards to the vacations, I didn’t think these were necessary or is this due to the radiation? 

Regards

Mark

moomy
Posted by

Hi Mark,

its done as ‘norm’ in the USA after an auto, I think but not that often in the UK.

hugs xxx

Moomy

BadgersFan
Posted by

Thank you all for your support. After getting only two or three hours of sleep before my pet scan, I went to bed at 8:30 last night and got about 10 hours of sleep. It’s the best sleep I’ve gotten in months. I’m sure that the good results played a role in that.

Congratulations on making it 3 months post transplant. It’s hard to believe that it has already been 3 months. I’m surprised that they didn’t schedule another scan for you. We discussed this with my radiologist yesterday, and he wants me to have a cat scan with contrast in 3 months. It’s already scheduled for August 30th.

I understand about you and your daughter getting the MMR vaccine together.  My wife had to do that with our son for the chicken pox vaccine since she couldn’t remember ever having chicken pox as a child and grew up before there was a vaccine for it. Our daughter ended up getting chicken pox when she was 12 months old (so just weeks away from getting the vaccine. So you can’t always count on herd immunity.

 I didn’t really get an answer about my skin. He did agree that the skin over the hole left behind by my removed central line looks thin. He suspects it will get more normal with time. He thought that the rash from my watch might be an allergic reaction. Coincidentally, I have my annual skin check with my dermatologist on Tuesday so I can ask her about that, my hair loss and my dead toenails (both big toenails died last summer while I was on BEACOPP. they both have cracks at the base of the nail since December, and the crack on one nail has not advanced since December, while the other one has advanced about half the length of my toenail, so I’m concerned about the one with no growth in 6 months).

I want to clarify a few things.

I haven’t had a stem cell transplant (yet?). The plan last October was to get me into remission (I had failed to reach remission after two cycles of ABVD and four cycles of BEACOPP) with B&BV, then have an auto SCT, radiation, and then up to 16 cycles of BV. The reason for all this is that my Lymphoma is chemo resistant, and that a comparative study of patients with refractory disease (like me) showed significantly fewer patients relapsed if sct and BV were done after reaching remission vs no treatment after remission).

My pet scan on 12/14 was negative and we started prepping me for the SCT, but my bone marrow didn’t respond to the growth factor (I even became neutropenic 2 weeks after we failed to collect). Plan B was to do one or two cycles of BV to keep me in remission while giving my bone marrow time to recover from all the chemo so that I could mobilize stem cells, then do the auto sct, radiation, and BV.  But, given that my CBC showed that I was still neutropenic after two cycles of BV we went to plan C which was to do radiation and a follow up PET and then reassess whether we still need to do the SCT and BV.  So that is where I am now. The next step is to have an appointment with my specialist to work out the plan going forward. A new wrinkle is that my radiologist told me yesterday that my specialist Is out of the office (he didn’t know whether it was short term for a vacation or long term for a sabbatical) so I may need to see one of my specialist’s colleagues instead.

Regarding the measles vaccine. The state that I live in allows very generous exceptions for childhood vaccines. Due to a large anti-vax community in my city, only about 80-85% of kids are getting immunizations, which is not enough to provide herd immunity. Unsurprisingly there has been a measles outbreak near the city where I live. You need two measles immunization shots to have immunity that lasts for your lifetime, otherwise the immunity wears off or becomes weakened, I’m not sure which. They didn’t figure that out and give children two MMR shots in the US until 1989. Prior to that they only gave one MMR shot. I can’t remember whether I got one shot or two. Due to the outbreak they are recommending that people get tested to see if they still have immunity. I asked my team if they could do that test along with the other tests that they were doing and they agreed. So in a couple days I’ll find out if I still have immunity. Assuming that I am no longer immune or have weakened immunity, the next question is when should I get the shot. That will depend on my neutrophil level (I don’t want to catch the measles from the vaccine) and whether we are going to do an sct (in which case I assume it would be better to do it afterwards). The goal of this test was just to know my status before seeing the specialist so that I could start the vaccination discussion. 

Take care everyone, and thanks again for all your encouragement and congratulatory comments.

-- Jason - BadgersFan --