Keytruda not worked

Hello Tillyboo 

I am Brian one of the Community Champions here on the Online Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer however by me replying your post will be "bumped up" to the top of the group and I hope seen and answered by other members of the group.

You may find an answer by joining and posting in this group and here's the link you need:

Chemotherapy forum 

I wish you well with your new treatment

Best wishes - Brian.

Hi Brian.

Since Thursday I have been doing some research into psuedoprogression with immunotherapy, which can show up to 24 wks. My husbands only had 4 x 6 weekly infusions & this was stopped on Thursday, no prior warning.

And treatment moved to carboplatin pemetrexed every 3 wks.

Do you you know if we have the right to a second opinion regarding this end of keytruda & put onto chemo?

His usual oncologist wasnt present & the time before, she was present but another oncologist was doing all the talking, who was the same onco we saw on Thursday..

We still dont know her name, as shes very fast & as a very strong accent.

But considering the immunotherapy stopping after only 4 infusions & each question I asked she couldnt answer ie the bone met had increased in size, I asked how much & her reply was I dont know as nothing to compare to. I know the lung tumour as grown from 5cms to 7cms in 9 mths. Could this be psuedoprogression & again she said no.

But Thursday was a really badly handled day & I feel a second opinions needed & also for continuity, to speak to his oncologist he is used to. I have left messages & hope his normal onco will call before Friday, as neither feel happy with him starting chemo. He had little side affects with keytruda, put weight on, no cough, didnt feel. His only problem was knee pain & he was wearing osteoarthritis knee supports for the first & was struggling to walk. He had a stroke in 2018 which left him with a right side weakness & he would normally wear a foot drop brace, so he couldnt wait to get the supports off.

I'm not trying to tell the oncologists their jobs, but I just think Thursday was handled in the most harsh & unprofessional way that absolutely knocked him & myself sideways, as hes been doing so well, apart from bouts of fatigue.

I'm just not sure how I go about contacting the doctor I want at the Royal Marsden, as I do think a proper conversation is needed, before he starts this chemo on Friday ( pre treatment Thursday).

Not sure if you can advise

Hello Tillyboo 

I am so sorry you find yourself in this situation. So here's our advice regarding a Second Opinion:

Getting-a-second-opinion.

If you are having issues with this you can contact your hospital PALS service (Patient Advisory and Liaison service).

If you wish to contact a consultant at The Royal Marsden - here's a link to who they are:

Consultant-directory.

You can get a referral via the NHS - if you wish to arrange a Private (Paid) Consultation - It's Private Care At The Royal Marsden on 0207 811 8111.

I can't help you with the technicalities of Lung Cancer as I have a different cancer although I understand you have spoken with chellesimo who is the Community Champion looking after the Lung Cancer group.

If I can help with anything further please do let me know.

I wish you well going forward.

Best wishes - Brian.

Thank you. I cant find his oncologist there. I was looking earlier on the Marsden site & her name doesnt come up, we've been dealing with her since March & she was in on Thursday, but busy.

Ideally I would just like to speak to her, but if paying to speak to is the only way, then so be it.

If she doesnt ring me by Tuesday, I'll contact PALS, I dont want to complain, I just think things could have been handled better & they more interested in the STRIKE trial hes on & spent more time with research nurses, than an oncologist who just through a rocket at us.

Thanks for your info, hopefully I can get this sorted. 

I'm just worried about his weight dropping, as his appetites gine to zero no interest in anything, as he was when first diagnosed.

Hi Tillyboo I am so devastated for you and your husband. I know how angry you are that you weren’t told sooner, and that he was given his blood test appointment as if treatment was going ahead,  The truth is probably that the oncologist didn’t even look at his scan results until the morning of his appointment. I know my oncologist only looks at my results on the day. The person that you spoke to that told you the scan results were back on Monday, would only of known that, that the results were back, they wouldn’t have known what those results were. Is this a good system? No probably not, but they see hundreds of patients and probably do not have the time to do it any other way. 

Personally as upset as you are, I wouldn’t wait until Tuesday. On Monday I would phone your husband’s lung nurse and tell her how unhappy you feel about the way this has been dealt with. Tell her you would like to speak to the Oncologist from the Marsden that you have seen before. If this does not work, then contact PALS. 

Hi. I have already contacted PALS via email tonight & left 2 messages on the lung unit & the trials unit.

When I found out the results were in I asked for hubbys oncologist to call to go through them before the Thurs pre treatment, so she was emailed & aware.

I will ring Monday, but I'm in hospital Monday having a load of tests done,  i cant canx appointment & it will unable to answer my phone. So ringing at 9am & if I dont get any voicemails will keep ringing until I speak to someone.

My gut feeling Thursday was to do with cost of keytruda & being on this STRIKE trial. The whole appointment was chaotic TBH. So I wont stop until I get answers. When my husband goes into onco room he loses his voice, because ges so anxious, he doesnt talk to anyone in the waiting he literally hates going there & was in a terrible state on Thursday. I have expected him to say he wont go back, thats how freaked out he is. My worry is the appetite thing with him, its gone again & he needs to eat. He was ok before Thursday apart from scan anxiety & boy did he have reason for that! I was shocked so I cant imagine how he felt.

I will get this sorted before next Thursday x

I think you have done the right thing. I am sorry you are having tests yourself on Monday, and hope everything will be well with you. 
I have told you before what a great job you are doing for caring for your husband, even if you don’t believe you are! You definitely are fighting his corner for him! X 

Thank you....I'm tired now 9 months of this hell & 6 mths of treatment being told its working, then bang its not. Its like going back to day 1. 

I really dont have the fight in me now after Thursday debarcle, I've gone from shock to angry. 

I dont even know if I'll make my own hos visit tomoz as I'm so tired & feel deflated & his first chemo falls on another of my hospital dates this week & this one I cant miss! 

So hopefully the onco I'm chasing will get in touch, I have all my questions written down x

I managed to speak to my husbands normal onco this morn, a 50 min call & she explained everything. The lung mass & lymph node have grown slightly & the reason to stop keytruda & change to chemo is not wanting any further spread, as the last scan showed no further spread, apart from the bone met, which we knew about. The brain met as gone & she said is excellent, after one cybetknife treatment. I explained my husband suffers badly with anxiety, which shes aware of & to make it clear to other oncos how to deliver results, as the way the onco spoke on Thursday, even floored me & made me think thats it! The onco I spoke to this morn is arranging a full spine MRI to check the bone met & see if maybe another round of radiotherapy can be done, as the pain as become bothersome again, not unbearable, but nagging. She explained he'll have 4 cycles of chemo & if tolerated, will then go to maintenance chemo, appox 10 mins every 3 wks for as long as needed/tolerated. None of this was really that well explained in clinic last week. She also said the mix of chemo he's being given, is fairly well tolerated & hopefully side affects wont be too bad, just depends on the person, but theres another plan in place if not tolerated. My husbands been crying this morn again, after the way the results were given last week, he said he just cant get the words " disease progressed" out of his head. So I'm not sure how he'll be this week going back & if its the same onco as last week, I just hope my words are relayed back to her! 

All this stress worry shock could have been avoided if that result had been given differently. I just hope he can get back to how he was before this happened. I know its made me feel quite low so I can only imagine how hes feeling...

I managed to make my hospital appointment today,  by the skin of my teeth, as oncologist was on phone. But I made it! X

Hi Tillyboo  I’m sad to hear that your husband was crying this morning, he must be so scared bless him. Thank goodness you managed to get through to the oncologist and it sounds like she has explained things more thoroughly. It does sound like the change in disease is minimal, and I can understand them changing the treatment to stop it progressing further. 

I know I have mentioned before that I haven’t had chemo, but I have had family members that have had it. Like all treatments everyone is different, and I know that doesn’t feel helpful at the moment, but hopefully he will tolerate it well. 

Well done for fighting his corner. Such a shame that the communication was so poor last week for his scan results, but things should hopefully be better now going forward. Also well done for getting to your appointment, you have such a lot going on at the moment ! X