Bendamustine + Brentuximab Vedotin

Hi  

they tend to use BV as a maintenance after an auto in the USA, not sure if they yet do this in the UK. I think they have begun trialling it though. That’s the ‘aftercare’ that Jason will probably be getting.

glad you and he too, feel more free about talking about this with your families, it’s important to be able to release your fears and worries and share the hopes that this will give you a much longer life with those loving families. 

hugs xxx

Ah I see Moomy, I wasn't aware of that!

I will think of you (and your daughter!) every time I see the Tesco Ad now!!

Xx

Hi  

im not sure how many Christmas adverts they are running this year of course! But yes, she does the final few words in one of them, quite funny as it really was a rush job and she recorded late at night after a show, in her camper van!!!

Hugs xxx

Hey everyone. I’ve been pretty tired the last couple days so I haven’t posted. I want to clarify something that I said in an earlier post. My pet scan is on the 14th, but that is December, not November. I’ve gotten the whole schedule now from my transplant team, although it assumes that I’ll be in remission after my 3rd cycle and that there won’t be any delays getting approval from the insurance company. The pet scan and a bunch of other appointments will be December 14th. They will do stem cell collection between Xmas and New Years. Day -6 (start of high dose beam) will be January 3rd, I think. Somewhere in the middle of it I will get a new port with either 2 or 3 connectors. As my anxiety is increasing, so is my wife’s. Her latest concern is that she won’t get or keep the house clean enough and I’ll get an infection. I’ve tried to reassure her, but she’s still worried about it.

Nikki, how did your husband’s pet go? Is he in remission? Making progress? Has he started radiation treatments as planned?

HopefulMummy, how is cycle 2 going?

One question for everyone, how is your peripheral neuropathy? I’m asking because it was recently mentioned. So far, it hasn’t been a problem for me with B&B. I had some with BEACOPP, in my fingers and toes, but it seems to have gotten better and I haven’t sensed it getting worse since starting B&B.

Hoping everyone is doing well.

Hi Jason, we were always at our best when we had a plan to work towards.

Just asked my wife Fiona about the cleaning of the house thing and she said 'your wife should not stress over this, just keep work surfaces clean especially door and WC handles........ and make sure that Jason washes his hands after being in the WC....' yes that was a dig at me as in the early days as my mind was not on the game post SCT.......'and you are the monitor for folks coming to visit who have bugs'

Jason, I see that you have not joined the SCT Forum, it would be a wise move as you will pick up a wide range of first hand experiences form folks who have walked the SCT walk and can talk the talk. We also have some useful threads about some of the aspects of the SCT Journey including the M in BEAM.

Hi

Day 3 of cycle 2 today for me (though early on day 3 as it is only 9am!) .

I feel much 'better' than the first cycle so far! I am eating much better and am awake etc. The nausea at the moment is very well managed, I even woke at 1am hungry!! No shaking, confusion, high pulse, extreme thirsts etc which I am pleased about and I am hoping it stays this way! 

I was incredibly anxious at the unit on day 1, mainly because I didn't want to experience the same 'confusion' again but also because I hate the piriton they give you with a passion!!! Unfortunately I had a temp of 37.5 on leaving which I have been monitoring since and while it hasn't gone above that it hasn't fallen much below either. My CNS has said it is likely the Dex as I also have slight facial and chest flushing. She is going to give me a call later to check in on me too as they are concerned I will experience the same symptoms this time also, and with me being almost 2 hours away from the hospital, they want to make sure there is a bed there for the weekend for me if needed! I have everything crossed I stay this 'well' and can stay home for the weekend!

Jason - I had a new PICC fitted with two connectors, it took about half an hour and was only sore for a day or two! You will be ok :-) I am also anxious about 'germs' after SCT with three young children and a dog (who hates a bath but that's a whole other story!). I think it's just about preserving our own hygiene the best we can - daily showering, hand washing, wiping the toilet before and after use etc. And just trying to stay away from people who have or have had an illness. I've always been a bit germaphobic and have a subconscious rule of keeping my hands away from my face unless I know they are clean! I don't like to eat with my hands unless I have washed them first either..

Sorry, I got confused with dates! Your team have been very good arranging all of your dates for SCT! I am yet to meet the transplant team and still have no idea on conditioning plans, though I'm assuming BEAM also .. I think the worst is just the waiting on PET and results as we know that things can change so last minute - it is hard to build yourself up to something that might suddenly change! 

Re peripheral neuropathy - I haven't experienced that yet I don't think, though I seem to get pins and needles easier if I am say leaning on my arm in the car to nap etc?! How are your muscle aches doing now?

I am also wondering how you husband had gotten on Nikki..? Sending best wishes for results!

Anyway, the older children stayed a their Nanny's house last night so it is silent here except for the odd cry for a bottle from the baby. I'm sure come 3.30pm it will be as if all hell has broken loose and they will have lots to tell Mummy about! So I had better get a bit more sleep in, get showered and brace myself for later on...!!

Xx

I’m writing this while watching the badgers play on tv. 

I had my birthday on Thursday. We’ve been doing little things this week to celebrate it and I had a great day with my wife. 

Friday morning, my wife seemed exhausted in the morning, so I walked our dog for an hour. I was exhausted by the end of the walk. By the afternoon, my legs and shoulders were very sore. I had trouble sleeping last night because of the pain. Today at noon I broke down and took an oxycodone that I had leftover from one of my surgeries. I had previously discussed this with the call in nurse a few weeks ago, so my oncologist was ok with this. I’m still a little sore, but it is very tolerable now. 

I’ve also been very itchy this last week. It seems to have formed a rash. I’m no longer sure if this HL itchiness, or a BV side effect. I have a number of little cuts from all the scratching. I can’t wait for all of this to be over. 

HopefulMummy —

I’m glad that you are doing much better on cycle 2. Welcome to the dex flushed face club. I hope that your fever went away without any issues. So far I’ve been lucky and only had one fever during treatment (the hospital visit that I described recently).

Where is your new picc line located? Is it in your arm, or chest? I’ve been told that it will go into my chest and will be a port, not a picc (but will have tubes sticking out of my chest like a picc line). I imagine that it will make it hard to sleep, since I often like to sleep on my front. I was also told that it will need to be flushed daily and that they will give me syringes so that I can do it from home. Have you been told this?

I’m starting to feel very sleepy now, so I think that it is time for a nap.

I hope everyone is doing well.

Happy Birthday for Thursday! I'm glad you have been doing small things all week to celebrate :-) I hope Badgers won!

Yes the temperature has gone down now, seems to go back up slightly if I'm tired, but not above 37.5, so trying to rest as best I can - though the Dex doesn't seem to like me sleeping much..!! At least I am eating though (i am craving lots of protien and carbs!) and feel so much better than the first cycle. Hoping I dont suffer a steroid crash today as yesterday was my last day of them!

I had a rash the first time Jason - is it on your stomach/thighs? I was told it was a drug reaction rash there ... It came up around week 2 and went by 3 ..

Yes my PICC is in the top of my left arm. I'm glad to not have a port as it seems a bit daunting.. I wasn't aware a port needed daily flushing however! My PICC is done once a week at the same time as bloods either at the clinic or by a nurse who comes out to the house. It would be very hard to change the dressing, take bloods etc one handed so I like that they do it all at the same time! i guess with a port though you would have easier access to do it yourself! Either way, think of it as a temporary body part, it won't be with you forever and it will be amazing once it get removed and you can sleep however you like..!!

Off to make some breakfast now, been thinking of food every time I have got up for the loo in the night so I think I have most definitely earnt a nice bowl of porridge (or if i go with my cravings that should say a nice piece of steak or pasta bolognese??!!)

Xx

Good morning folks, I just want to say I do love this conversation, a true demonstration as to how peer support should work :) 

Belated happy birthday Jason, I am celebration my 63rd this week and my wife and youngest daughter were having hushed conversations yesterday lol, but granddaughter number 2 who is 4 going on 21 loves a good party so O would say cake and party games will be on the cards...... but she discovered the game Twister a month back!!!!!!!!!!!!

I had a double line PICC in for all my main cycles of chemo but my SCT team insisted I had a double line Hickman put in for both my SCTs, they said the cells were far to precious to put through a PICC.

Hreat you are getting out and about and keeping active as this is the best way to fight the fatigue, just listen to your body.

Having a good appetite is gold as at times this is such a challange......try a little Single Malt in your porridge;)

Keep well everyone. 

Thank you both for your birthday well wishes. Mike, I hope that you have a great birthday this week.

It took triple overtime, but the badgers won. I fell asleep during the middle of the game, but I did record it. 

Glad to hear that your fever went away on it’s own. I’m glad to hear that you are eating well. So far, I have been lucky and haven’t had much trouble with eating on any of my chemo protocols, with the exception that I feel nauseous when my stomach is empty. 

The rash is on my ankles, armpits, part of my upper arm, and underwear area. I think that moisture plays a role in making the rash worse, so I’ve been working on improving that. Normally I sleep in cotton gym shorts and a t-shirt and then put on a sweatshirt and pajama bottoms when I’m not in my room. So now I’m trying to wear a robe around the house instead of the sweatshirt and pajama bottoms since it allows better ventilation. So far it is improving things. 

To clarify my earlier post, normal ports only need to be flushed once a month. But it sounds like these multi line ports are different and need to be flushed daily.

How are you doing with showers with your picc?  I had a picc when I was on BEACOPP. For the first week or two, my wife would wrap Saran Wrap over the port and tape. This was a problem for two reasons. First, I couldn’t do it myself with only one hand, so I always needed to coordinate shower time with my wife. Second, the tape irritated my skin and hurt a little when pulling it off. So after a week or so, we looked online and found special covers that can cover your arm in the shower. These are primarily designed to cover casts, and they are easy to slip on over your picc line using only your other hand. I highly recommend getting one, if you don’t have one already.

I was pretty tired the last time that I posted so I didn’t engage in the cleaning conversation. My wife and I are very good about washing our hands. Our daughter is about 80% there on hand washing. We’re more concerned about our puppy who drags in all kinds of dirt, and germs. She also sheds quite a bit (not sure if there is a sanitary issue there or not).

Hoping that everyone is doing well.