Advice

Tillyboo, how really worrying for you.  I'm sorry to hear you've received this inadequate info about your husband's progress and news of treatment planned that you're not sure about.   I haven't been in this position myself, but when I had questions that didn't seem to be answered well enough to stop me worrying, I would phone either my MacMillan Nurse (I had two actually, and had their names and contact numbers) and one or other could usually answer me.  When I graduated from active treatment to surveillance and was under the care of a pulmonologist I found I had more questions more often, usually because I wasn't being followed up often (and the longer you wait the more worried you become, right?) I would phone his secretary and tell her what I was bothered about, and ask for answers, please!  She was a lovely lady who would promise to ask Dr ....... and let me phone her back for the answer.  She was really amazing.  Would something like this work for you? Phone the hospital switchboard and ask for Dr .........'s secretary.  Be persistent and leave messages if necessary.  It would seem really crucial that you get the answers you need before your husband starts any strong drugs.  Keep us posted and good luck! 

Thanks for reply. 

I dont have oncologists secretary number, only the lung unit, STRIKE trial unit ( who never answer) or Macmillan Hotine if ill. He isnt ill, well apart from being in shock.

I just think this sudden change in treatment, deserved its own appointment, not a normal pre treatment test day. I still dont get why he had bloods taken when they knew he wasnt having anymore keytruda. Why do that, the bloods werent even back when called into see doctor.

I just feel.this as been done in a wrong way TBH I thought they were more interested in carting him.off to do the STRIKE trial tests. They must have realised mentally he was in shock to carry on, but no off they went!

I know the scans were back before Thursday as I had rung.

Everything feels "off".unless I'm becoming paranoid! But I really thought hus scan results deserved its own appointment & his normal oncologist who knows my husband & knows his anxiety is bad wasnt around. If he is under this new one, she hasnt anyway of dealing with anxiety patients.

So sorry to see what you and your husband are going through.

I haven’t been in the site for a while but have just seen your query about carboplatin/pemetrexed treatment.

I had this following a lobectomy (tumour was in upper right lobe). It was done in a bid to prevent mets as the tumour had burst through the lung covering.

I was given b12 injections and folic acid before treatment. You also take steroids/anti sickness medication just before and after each treatment.

Regime was once every three weeks for three months. My dose may have been less than they plan to give your husband but in my case it was very  doable. A little nausea at times and a bit tired as the treatment progressed. No hair loss and no real loss of appetite. they will do blood tests just before each treatment to see how white cells are doing. Mine dropped so I had to do some extra injections to raise them. Chemo ended 20 months ago and so far so good….

Hope this helps a bit and hope if you go this route that your husband copes ok too. 

I cant really advise about getting hold of your  oncologist. Have you tried just asking hospital switchboard for his secretary’s number? Or google him to see if he has a private practice with contact number on that? 

Thanks for reply.

My husband is stage 4 lung cancer T3 N2 M1c. 2 bone mets one in spine & one in lilac bone ( pelvic area I believe) & a 6mm beain met. He was seen by a Prof Mary O Brien at the Marsden who said he was a good candidate for a STRIKE trial to do with brain mets. Cyberknife worked & the brain met is a dot, barely visable.

So it was decided Keytruda immunotherapy only & hes had 4 infusions & 3 zometa ( bone treatment) infusions. His first scan showed a shrinking in lymph nodes & cancer stable, 2nd scan shown everything grown inc the lymph node. So now changing to carboplatin/pemetrexed stopping keytruda.

Something was mentioned about 4 cycles & maintenance, I think? But it was all to quick & I wasnt ready for the scan results to be bad esp after going through all the pre treatment bloods etc we just thought, bloods see doc & off for treatment following day & if scans were bad, we would be notified before hand.

I just think a change like this warranted its own appointment, I didnt see the point of having bloods taken etc in prep for keytruda the following day.

He had B12 on Thursday & was sent home with folic acid & steroids & back next Thursday for pre treatment before chemo on Friday.

The problem with my husband hes like a rabbit caught in headlights when it comes to the Marsden, he literally says nothing, leaves it to me & I am absolutely worn out, as I have my own health issues as well as his.

The way these chemo advice sheets read that you can have bad reactions whilst having infusion & vomit etc TBH if itcwas me facing it, I'd think twice. But he as no idea whats on the sheets, side affects as he doesnt want to know, so I'm in a very lonely position as being his only point of contact. He hasnt any symptoms of lung cancer no cough chest pain breathlessness nothing. He simply cant cope with diagnosis & never well

But the strains taking its toll on me. I have left a message on the lung unit, but I'm in hospital Monday for myself & the day his chemo I have gynae results.

Doc said this new treatment takes 4/5 hours, did yours? His keytruda took about 40 mins & zometa 20 mins. I dont quite understand why the length of time having treatment? Again a question I should gave asked Thursday, but wasnt prepared.

Sorry for my lengthy post, but I'm just worn out trying to get info & answers

Four cycles (treatments)  is what I had .. once every three weeks.
Four to five hours about right. I would have blood tests as soon as I got there to check I was ok for treatment. Results can take an hour or so to come back. If all ok then they hook you up to a drip for the infusion. It goes in a drop at a time and bottles have to be changed during the session so it can take a couple of hours.  Then they like you to wait around for a bit while they make sure you are ok. There will be other people doing the same and there’s a lot of hanging around . Definitely tell your husband to take a book, some music and ear phones or whatever as time can drag. Also good to take a few simple snacks and a warm jumper as some people get a bit cold.
He will probably feel tired afterwards and will need someone to get him home. 
Hopefully all this will be explained at the pre treatment session. Everyone is different so they have to warn you about severe sickness etc. but it doesn’t mean he will get it. Fingers crossed,

If you haven’t  managed to speak to onco by the pre treatment appt then that’s a chance to raise your concerns. But it’s a week off so someone really should get back to you before then. Stay strong.

Ok thank you