Nivolumab

Hi Mark

I have just noticed your thread on this board!

So pleased to see that your team have a plan that you are happy with.

I hope all goes well with ESHAP and that it's not a bad as you fear.

Take care

Xx

Hey Hopefulmummy.

How are you feeling? I hope things are progressing well for you?

Im sat in hospital at the moment on day 3 of my first cycle of ESHAP and so far so good. I feel totally fine with no side effects with the exception of the lack of sleep due to the steroids. I was even  in the park with my youngest son last night playing football so I’m happy with that. 

Ive just had a visit from my consultant and we are going to have a scan after 2 cycles and then make a decision. I’ve told him I would like to get to the Allo and just get it done so hopefully things will progress quickly. 

We spoke about the B&B again and they are looking into this but he thinks it may be a cross border funding issue but as we both said, hopefully I won’t need it but if I do he will definitely chase it up. Another option is for me to get a Welsh postal address should I need to get around it but that’s lol further down the line, it would just be crazy if I had to do something like that. 

I will let you know how it all goes. 

Regards

Mark x

Hi Mark,

Recovery is going well thank you, I am doing almost everything I would be on my 'good days' during chemo cycles, wouldn't be ready to go to work yet as I do still get fairly tired - especially mentally - but luckily I still have a few months of Maternity Leave left! I feel as though I am doing fairly well when I think of the brief recovery timeline the hospital gave me. I am back to my pre admission weight now, but could do with adding a few more kilos, so working on that!

I am so glad that you are getting through ESHAP with minimal side effects - I hope it stayed that way once the steroids were finished with! I had a quick search for ESHAP and it looks as though you had to have a 24hour infusion? Did you have a pump for that? You say you played football so perhaps not? Definitely guessing you weren't running around hooked to a drip stand haha

I have everything crossed for a quick Allo - and its good they will scan you after 2 cycles - will they be doing a third or will u hopefully go straight to transplant after the second?

Oh gosh I really hoped the access to B&B wasn't different here - let's hope you don't need to do something like that, talk about added stress!

Hope you are feeling well today. 

Xx

Hi Hopefulmummy,

Good to hear you are improving all the time and getting things back to normal as much as possible. People honestly don’t appreciate the effect a stem cell transplant has in the body so well done you. 

I’m still doing ok but did struggle over the weekend when the steroids wore off. It’s the the first time I’ve had conventional chemo since my transplant in July and I can say I have definitely not missed the sicky feeling. Brentuxmab and then recently the Nivolumab are certainly a lot more gentle on the body and enabled me to lead a fully normal life but the ESHAP I can feel has had a negative effect. I was back in the gym and running at the end of this week but was certainly taking things easy although I am still working. 

Part of the EASHAP is given 24hrs a day for the first four days so it did involve bringing home a bottle which I wore around my neck in a sling like holder. It works on pressure administering the drug slowly through out the day and night and was only a pain when sleeping although it was better than having the hospital pump beeping away through the night. I had to go back in this week to have my levels checked and these all came back within the normal range so, so far so good still. 

Regards

Mark X

Hi Mark

So sorry, I thought I had replied to this!

I have been thinking of you - how are things? Have you had your PET? 

Hey Hopefulmummy123,

Hope you’re doing ok and getting back to normal? 

I doing ok but have had a few rough days. I finished my latest  cycle of ESHAP last Friday and really struggled over the weekend. I’m not sure if it’s the chemo, come down from the steroids or a mixture of both but it’s hit me hard and I spent a few days in bed feeling sorry for myself. Feeling better today so I might even venture into work tomorrow but I’m not pushing myself. 

My next pet is on Monday coming. Not sure what to expect really. The only lump I could feel has gone but my back is sore again which has not been a good marker for me in the past so I’m not guessing anymore and will just keep everything crossed. 

With regards to BvB, I’ve had correspondence on another forum with a person in England who’s had BvB this year prior to an Allo so I will put this to my team if we need to go to plan G or is it H. 

I will let you know how the scan goes. 

Regards

Mark x

Morning,

Yes I am doing okay thank you. Quite tired at the moment, which isn't being helped by light morning's and 3 little early risers!! But (after hiding under the duvet for a minute or two) I remind myself I'm very lucky and make myself an extra strong cup of tea!! 

I'm sorry to read that you have had a rotten weekend but pleased you are feeling a little better now. I'd say you may as well have the rest of the week off now, no point going in to work after the bank holiday is there ;-) 

Good luck with your PET Monday, I'm guessing they would review it pretty quickly so they can get the ball rolling with whatever the next stage may be for you...? I have everything crossed it will be your Allo and not Plan G, H or any other letter in the alphabet!! I really hope the back ache is just from being in bed and being less active. Or those bad cells being destroyed!! 

Positive that you have found someone in England who has been approved for B&B. At least you have a good case for discussion should you need it. 

Lovely to hear from you. All the best next week 

Xx

Yes, a strong cup of tea will always make me happy. After 25+ years on a building site you’ve got to be able to stand your spoon in it. 

Let’s hope it is them bad cells been destroyed.

Just a quick update as I’ve just had a call from my transplant team and I’m preliminary booked in for the 10th June with admittance on the 5th. I’ve burst into tears and got quite emotional, it’s getting real when you start getting dates. 

Regards

Mark x

Sending you a man ((hug)) Mark - like it or not.

Oh fantastic news, so happy you have a date to work towards! Pour some of that tea on it so it can't be moved and changed ;-) 

You've got this - this time next month (almost), we'll be celebrating your re-re-birthday!