Anyone with experience of Tecentriq ? ( atezolizumab)

Margaret et al

My husband had his 4th Atezolumab 2 weeks ago. He has been getting steadily worse from about his second treatment. Most aches and pains are in the places we know the cancer has attacked in the past ie his sternum and his spine. He is also experiencing pain on the tight side of his stomach which is a big worry because that where his liver is located and a known side effect is hepatitis. When we saw his oncologist last time, I expressed my concern and he organised a scan which my husband had last week. The oncologist also talked about pseudo progression which can show signs of progression but it’s not the cancer. I struggle to understand this as I’m sure my husband’s pain is real and the worst he’s experienced since his diagnosis in 2014. The extra Oramorph on top of his slow release morphine capsules doesn’t help as most of his pain is from his bones and Oramorph only works on soft tissue. We are relying on ibuprofen at the moment which does, miraculously, seem to help.

We see his oncologist again on Thursday but I doubt the radiologist report will be completed by then. However, if the scan shows progression, I don’t how we make a choice about continuing or not. It could be pseudo progression or his immune system may not have had time to alter the way it works yet. It is all so uncertain with immunotherapy.

I was never happy about the choice of this drug because it was a default choice after a biopsy on the sternum didn’t produce enough cells to show a positive  or negative PDL1 count, which would have given us an educated choice, albeit from a choice of 3 drugs.

My husband also has a reduced appetite but he’s learned from previous experience to eat regularly despite this.

Love to all of you.

B xxx

Hi Blue

Your post re your husbands story is very similar to mine, my pain levels have really increased over last few months plus I feel my quality of life has gone down to. I am slow release morphine patches, I have Oxynorm liquid morphine to take as a top up as for me as it works better on nerve pain than the Oramorph did, plus full dose of 8 tablets Paracetamol. A few months ago I only needed the top up Oxymorm occasionally now I’m taking 4 doses every day, my palliative care nurse is increasing the dosage of my patches so hoping this will help

I have got to know a couple of ladies from my hospital as we always have similar appointment times in clinic and have our treatments on the same day, both of them have now been taken off Atezolizumab

I asked my oncologist why some do well on this treatment and others don’t and he said ‘honestly we don’t know’ as it’s such a new treatment it will take many more years of research to get the full picture.

I often wonder if patients who have a higher expression of pdl1 do better than for people like me who had a 0% result but have no regrets about trying this treatment as like my daughter said to me if you don’t try it you will never know if it works or not, as with any treatment there is nothing guaranteed to work, I wish there was one for everyone of us 

I really hope your husband has good scan results when he is back in clinic and can continue with this treatment

Love Margaret 

good afternoon all.  hope the scan results that are waited for are good.as Margaret mentioned  many more years of research  needed. I was stage 3B  don't know if makes any difference. just hope it works or helps us all.  

Hi to all 

well I went for the scan results today and a bit of a mixed bag of news

Just to recap, on my 1st scan in August after 4 treatments it shown on ct that there was growth to lung tumour and to both mets on adrenal glands, but was told could be due to swelling of tumours which can happen on immunotherapy while the body adjusts to it. Today’s results, good news on the lung tumour it shown shrinkage from 5 centimetres to 4.2 centimetres but reports from ct show slight growth again to adrenal mets

Today I only saw the registrar as my consultant was on holiday and she said the treatment can go ahead this week as in her opinion ‘it must be doing something to have shown shrinkage in the lung’ but she said it would have to be discussed with the consultant when she is back from holiday to confirm the treatment can continue until next scan is due after another 4 treatments as she has the final say. So back to a waiting game again, she has upped dosage on my pain meds as she thinks all the abdominal pain I’m getting is from the adrenal tumours 

Looking at it from a glass half full perspective it could have been worse one smaller and one larger is better than both being larger

Hope everyone else who is on this treatment and having problems get some good news too

Love Margaret 

hi Margaret  glad to see you have came though thinking positive. when I go to oncologist I don't take it all in. tend to just cherry pick the good bits. that's why I take daughter with me.  nice to see you are been kept on treatment. I don't think they know what to expect regards our treatment , I have been changed to seeing pharmacist / oncologist  alternately between each treatment.  asking loads of questions.  onwards and upwards.  hopefully for us all.  

hi  Margaret have you had your flu jab?  I was told that all in my house needed it this yr.  booked  at  Boots but not in till mid Nov.  told me shortage everywhere. 

Hi Darlo

yes had mine beginning of October, though  I live on my own my daughter always gets hers as early as possible also the grandchildren as well so we are all covered 

Can u get in any quicker at your GP surgery, mine fitted me in as soon as I rang to make the appointment when I mentioned the cancer word, I suppose using the ‘cancer’ word does have its uses 

Margaret

Hi Margaret

Pleased treatment can go ahead, it could have been worse shrinkage is good on the lung situation, and the slight growth could be caused by the treatment as this does happen, i was told that from the start of mine.

AS you say a waiting game again, please keep s updated. 

Talk Soon.

Take Care Ellie xx

"You Never Walk A Lone"

Hi Margaret

Good to hear you had some positive news from the scan. I hope that you get more positive feedback when your oncologist is back. 

I got flu jabbed through work last Thursday. I think me and the woman I sit next to were the only people to take it. As a work place overall I think only about 30% had it. A real shame as it was free too and I have explained to my colleagues who sit with me the need for me not to be near germy people. Too much scare mongering on the nonsense non fact based social media sites I think.

Margaret

Thank you and yes, any treatment is worth trying. Life is so precious.

Love B x