good day all. went to see oncologist today says happy with me to carry on with treatment. thinks if treatment was not working I would start with other symptoms.arranging for me to have scan end of December. love to read how we are all doing. ? 6th treatment this Thursday. oncologist did tell it can be several months before atezolizumab kicks in..
Good to hear the treatment is to continue and the oncologist is upbeat about it working. I had not heard that Atezolizumab can take time to work .
I have my 4th treatment on Wednesday and then I believe my 1st scan before my 5th treatment. I had a delay of 3 months from when I should have had my scan after chemo and radiotherapy because of pressure on radiology and was eventually sent to a private clinic. So I'm hoping that because I'm in treatment and not just monitoring that they get their finger out and do it promptly .
hi albondigas thank you for your comments. with this treatment so new don't think they really know what to expect. as Margaret's post said it will take them yrs of data to understand the effects. I am happy they are trying something. over 2 and half yrs since I had first symptoms. march 2016
They seem to be unsure about when the treatment kicks in and the possible side effects. My oncologist said that the effect of the treatment would be almost immediate and probably no side effects . I have just started losing my taste buds and my mouth is always dry ( neither are listed as possible side effects ). I know Margaret has the dry mouth but not the loss of taste .
I am just over 15 months ( Aug 17 ) since diagnosis and nothing so far has worked .
We will all have to keep each other informed to see how the treatment progresses .
thank you Albondigas to keep each other informed is why I am trying to keep thread alive. my first scan was not good but he said he was not worried by it.so maybe reason oncologist said it needs time. my next scan aimed for end of December with results early January. hope all goes well for you.
Just returned home from my 4th treatment. Oncologist was not showing much faith in me getting my scheduled scan in the next 3 weeks.
Luckily I have a private doctor who can get an appointment at a private hospital within a couple of days and it will only cost me £300. The hospital concerned has whole days set aside for overflow scans from my hospital anyway so it's a joke really! It would be for my own peace of mind and that is worth the world to me at the moment.
Hi to all on Atezlizumab
Been to clinic today and have been signed off for No 9 treatment on Thursday, bloods slighty abnormal but not to bad to stop treatment, they seem to to think the treatment is still helping despite the slight growth on met to adrenal gland. Another scan middle of January, (gosh, can’t believe I’m saying next year didn’t think I would make it at one point to 2019 ) then will review then .
Hope everyone who is on this treatment is still doing as well as can be
Good news that you are signed off for treatment no 9. They are obviously pretty positive that the treatment is working overall with just a blip on the adrenal gland.
Still doing ok after treatment no 4, but taste buds have definitely left the building! Oh well I always thought turkey tasted a bit like cardboard, might have to rethink Christmas lunch.
hi albondigas/Margaret . seems we are all rolling along. unsure what happening re appointments got two in 10days unsure if mistake ( seems to be happening a lot) one has no name of consultant to see. under stand re cardboard taste I have started getting it and losing interest in food. family wanting to arrange xmas eve lunch. see if I can get out of it after waiting 3 weeks for flu injection went for appointment at boots yesterday to be told they had the flu vaccine but no epi pens so unable to give out. lucky another branch of boots was ok.
My husband has just started.on this treatment and I am really concerned. He's had 2 lots of chemotherapy and radiotherapy in the past 2 years and was stable for a year afterwards.
In April he contracted pneumonia and was in hospital for 3 weeks. Oncologist has said no more chemotherapy or radiotherapy as a result. This is only option left available, or give up and let the cancer win!
A biopsy result showed pdl1- rather than a pdl1+ for immunotherapy treatment, so less chance of it working. Had his 1st one last week. Cancer is still contained in the lung and hasn't spread further in the body.
Next.one due on 7th December,.then 28th December. Apart from fatigue and problems eating (he had to have an operation on his throat as left voicebox had become paralysed) nothing has changed. Trying to remain optimistic but it's hard.
Would like to compare notes on your progress along with his.
hi judy wellcome to the room. like your husband I was stable for about a yr then mine returned. have been on this treatment for 6 treatments. circumstances have stopped my oncologist seeing how I am doing. feel great. next scan end of December.good post from nurse on this treatment. community.macmillan.org.uk/.../lung-cancer-and-atezolizumab-immunotherapy
well Margaret. looks like we will have to have a new years eve singalong I was not expecting to see this yr out. 3 years in march coming. see if I can make it.
Hi Judy, very much same as your husband, 2 lots of Chemo and radio, when the last Chemo didn’t work for me I was offered 3rd line Chemo or to try Atezolizumab, I didn’t have to think about it as I had made my mind up that I didn't want any more Chemo. I was also negative for the pdl1. but I wouldn’t say it won’t work if no expression of pdl1
I was offered Chemo Docetaxel or Atezolizumab and the trials what took place shown Atezolizumab worked better on patients with or without pdl1 than the Chemo Docetaxel
I have had ups and down while on this treatment as had growth to my mets but last scan did show shrinkage to the the primary so my oncologist did say it must be doing something, having my 9th treatment tomorrow so I think there is every reason to remain optimistic, this was my last chance of any treatment and I still have no regrets in taking this decision
Really hope your husband does well on this treatment
Thanks for your reply and raising my hopes. My husband's fatigue is getting worse and he would be laid on the settee 24/7 if I let him! His appetite is poor, but he has had an operation on his throat.
I'm not about to give up, having successfully come through stage 3 breast cancer myself, but watching him struggle is heartbreaking. Our daughter, a mental health nurse, is off sick from work and no help to me at all.
Your report is very positive, thank you. Oncologist did suggest treatment was definitely worth a go.if you're.on no 9 then all sounds good.Hope this continues for you Margaret.
My husband was a working plasterer and he is so disheartened that even odd jobs around the house are out of his reach. Paying tradesmen used to be unheard of, but needs must. I'm still booking mini breaks in the UK so all positive there. A 2 night break tomorrow with my sister and her partner turns out to be where he had his stag night 43 years ago. I bet the hotel has changed a lot!
Update you after next treatment. Thank you.
Heres my update:
My husband had his 6th Tecentriq treatment yesterday.
We saw his onc on Weds. He shared disappointing news from a scan taken 4 weeks ago. Further progression in sternum and new mets on adrenal gland which explains the pain in his side. We contacted the Macmillan nurse last week and she organised a prescription for Naproxen to help with the pain in sternum and neck area. He’s already taking slow release morphine.
His onc has suggested we continue with Tecentriq as it may need time to kick in. I’m very worried that it isn’t going to work. He also arranged for 5 blasts of radiotherapy to the sternum, starting today. This willl affect his breathing as the radiation will go through his lungs and heart, as if he isn’t tired enough .
I have also noticed that my husband’ thinking has slowed down a lot and his short term memory is failing him. Has anyone else experienced this? I’m worried that his brain mets have returned.
Big love to all of you
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