Immunotherapy treatment Pembrolizumab and Lenvatinib

Lots of love always Barb.  I’ve not logged on for a few weeks… gosh you seem to have had a rough time but at least you on the treatment and I know it will help and work.  Chin up Barb!  You’ve got this.  Lots of love always xxxxxx

Hi Barb

It's good to hear from you. wow what a time your having of it. As if you don't have enough to cope with I'm so sorry that your dog is poorly too, hopefully it is a trapped nerve and nothing more serious.

I hope that your pain is now under control and the sickness etc has settled down. Do you have any more sessions of the drug still to come? Please keep us posted how your doing. Thinking of you Barb. 

Take care lots of love Robin  ️ xx

Hi @Robin27 more session of the treatment?? Just 2 years! 30-minute infusion of Pebrolizumab for a maximum of 24 months. The tablets Lenvatinib for as long as needed or they become too toxic for me.

Think things are settling down, pain is definitely under control. I'm finding taking a tablet and sitting quietly until it's ingested works best. I keep saying to hubby, this's only week one out of, basically, a pretty unknown treatment so let's take all the time I need! He's more well you're sorted now aren't you!

Hug to all, Barb xx

Hi Walkinglady. I'll have a CT scan after session 3. Got my Oncology appointment through this morning for 15/11 (after cycle 2) I'm going to ask if it can be a telephone consult perhaps.

Not walking as much as we'd like as Jeffro's pulled a neck muscle and where Jeffro goes, or not, we follow suite!

Hus, Barb xx

Hi Barb

I'm pleased that the pain is under control and you have sussed what works better for you by taking your meds sitting down. Hopfully they will be monitoring you closely. I hope your dog is improving too. 

Lots of love Robin x

MrsBJH just caught up with how you are doing, I'm so pleased the pain seems more under control and am praying for you that the treatment works and you feel a lot more comfortable.  Also sorry your dog has problems too, I hope it turns out not to be too serious for him.  

Hugs, Lesley xx

Hi MrsBJH 

Glad things settling down for you now we pray the medication is successful in shrinking the cancer, take care big hugs xx

Hi Barb, What a week you have had-when you said that your first immunotherapy session was a bit of an anti climax was certainly made up for in the days which followed.  When cancer is diagnosed for so many a big fear is having unbearable pain-I hope that your medication continues to keep yours at a lower level now.  It surprised me that the cancer centre doesn’t deal with all your pain meds etc and you have to get your GP involved-it is good though that you have a good and helpful GP surgery. Your husband may have a strange sense of humour but his remarks can’t be helpful to you when you are going through an awful time. Hopefully your best friend and your sister have a better understanding of how you feel. Are your immunotherapy sessions 21 days apart like chemotherapy? You have the additional worry about Jeffro-I  really hope that he is soon back to normal.

Take care Barb and don’t forget we are always here for you. xx

Hi MrsBJH - wishing you good luck with it all. LR.

Hello Lovely Ladies

I'm not going to lie; it's been a hard 2 1/2 weeks. Firstly getting the pain under control and then getting the side effects of the opioids sorted, either constipation or diarrhoea, neither of which was easy! Bit of Catch 22 situation.

I developed pretty nasty ulcers on either side of my tongue and my gums flared up which made eating really hard, nothing spicy, crispy, too hot so nothing to eat was making me feel weaker in addition vomiting up nothing except bile was horrible. Now porridge is my go-to meal with Complan a follow up! I recently bought an air fryer (highly recommended!) which produces perfect crispy fish and chips. Hubby's in his element. I changed my diet years ago and went for more healthy eating, rarely having fried food, but I do like a chippy tea as an occasional treat. My CNS said how good they were and I was surprised how good it was. I roasted chicken breasts and vegetables with just a misting of avocado oil and sea salt and it was lovely. Got to get the timing right, the broccoli was like crispy seaweed but still yummy.

Out of the list of side effects I think the only couple I haven't experienced is heart attack and stroke. Mind you I'm having to keep a sharp eye on is my blood pressure which has got higher. In addition, my temperature is very low.

My Oncologist has suggested halving the dose of Lenvatinib to reduce the side effects which, I'm glad to say has helped. The main thing is my pain has reduced considerably which to my mind is good news, it's working and blasting the little s***s. 

I've spent more time going back to bed and own up I've felt pretty sorry for myself. I didn't even pop in to read messages so to those who PM'd me, sorry for no reply. Your lovely messages of love and support was like a welcome comfort blanket.

Have my next 30-minute infusion on Friday, to be honest I'm not sure if that's caused any side effects. Hopefully now we've got the pain and opioid side effects sorted.

Anyway, hopefully will be around a bit more, love and hugs to you all, Barb xx