Hi,
My husband neely diagnosed stage iv adenocarcinoma lung. Hasnt started chemo yet (LONG STORY) but had gap of 11 weeks between lung ct's with little or no progression that they could measure but still said very slight progression but we cant measure it?. No node involvement but staged at iv due to multiple pulmonary nodules (not biopsied). Main mass was approx 3.5cm. He had virtually no symptoms coughed one small spot of blood got this ball rolling) Fast forward this week. Hospital finally agreed to do bone scan on his hip. Been in pain taking paracetamol. They now say extensive tumor in hip, high risk of fracture. Wanted to operate more or less next day but we had to choose option of total hip replacement or pinning it and radiation. We had no input from oncology at that point so needed to get advice. We still haven't seen them but I phoned them as they weren't even aware the surgeon had seen him at that point. Didn't have time to see us. We're in uk so its pretty much like that here unlesss you are private patient. We happened to go to London next day about a trial and another oncologist gave him an injection of denosumab. He wants to start chemotherapy , cisplatin and pemetrexed (no mutations) but how long after surgery must he wait to go on chemo. The local oncologist said pin the hip and radiation. Not sure the surgeon agrees. Says it will most likely fail. How long does someone wait after a hip surgery to get treatment. He's 48 with otherwise pretty symptom free. Was feeling great prior to this but now paranoid his hip will fracture so hobbling more. Still off to gym to do rowing and upper body weights though! I could strangle him...
Sorry im rambling. We dont seem to be getting any cohesive guidance.
Thanks
Cat...
Ps i did spend some time looking if this is already asked. Found similar but didnt answer my question
Reply # - January 25, 2015, 09:02 AM
Hello,
Hello,
Welcome to GRACE. I'm sorry that you and your husband are dealing with this diagnosis and all the difficult decisions regarding surgery and chemo.
There is no definitive answer as to how long to wait before starting chemo after surgery. It's more a question of recovery; if your husband recovers quickly, chemo could be started within a few weeks. In Dr. Wakelee's post on adjuvant chemo after lung surgery (certainly a different situation, but the concept is the same), she states:
"Chemotherapy after surgery seems to work best when started 4-8 weeks after surgery. Some patients will have recovered enough to receive treatment earlier than 4 weeks, but that is unusual." - http://cancergrace.org/lung/2010/05/17/systemic-therapy-for-resected-ns…
If you are anxious to begin chemo, that may be a factor in deciding which type of surgery to choose, as the total hip replacement will likely entail a longer recovery period. That may be something to discuss with his doctors, although of course you want to choose an option that has a good likelihood of success.
Your husband will recommend when to start chemo after the surgery is complete and he/she has an opportunity to see how well and quickly he recovers.
Good luck.
JimC
Forum moderator
Reply # - January 25, 2015, 10:27 AM
Thanks jim,
Thanks jim,
That seems sensible, really we will have to wait and see. Im not sure if the decision to take the 'half measure' is due to the recovery time on total hip, hence delaying chemo. My husband didn't want chemo at all but now he may have opportunity of trial drug with chemo, and had a much better experience of another hospital. He will change once surgery is over. Even if he's suitable for trial he may still be recovering. We have both been freaked out by this. I was in recovery from a nervous breakdown when this happened. Just got a job after 3 years recovery, then this, hey ho,....noone said life was fair. Im trying to support him while not collapsing myself. We have very little support. He couldn't get on with hospital team. Now he has been kind of forced to deal with it. He's having major anxiety problems. I've been trying to tell them if they dont get him counseling or support he won't do it. But anyway, he has to now. Hopefully if he recovers from surgery maybe going to barts in London will help him as they were great when we went there. He said they were the first people to say 'we want to help you and do what we can to take care of you, noone else so far has bothered saying anything positive or kind'. They even got him denosumab organised, which has helped a bit. We only went about the trial. He's still only on 2 paracetamol a day. Sorry im rambling.
Thanks for your kindness...
Cat x
Ps im scared out of my wits by all of this but then i am a bit of a weakling...
Reply # - January 25, 2015, 10:54 AM
Hi Cat,
Hi Cat,
I don't want to argue with you but I would certainly dispute the "weakling" comment. Every one of us who has had to deal with a cancer diagnosis has been made weak in the knees and humbled by it, so you shouldn't feel that you are the only one who finds it a struggle. In addition to online resources like GRACE, perhaps you and your husband (together or separately) can find support groups in your area where you can be helped by the experiences of others in similar situations.
Just know that now that you have posted here, there are many people around the world who are thinking about you to give you strength, and wishing your husband well.
As you care for your husband, please be sure to take care of yourself as well.
Best,
JimC
Forum moderator
Reply # - January 25, 2015, 11:49 AM
Thanks jim,
Thanks jim,
It was a bit silly to say. I just get easy upset anyway. So for me this is overload borderline hospitalisation. Plus i see how stoic, well informed, kind and brave people seem on this site. I guess it's early days and I wonder considering how fragile ive been; I don't want to let my husband down. Thanks for reminding me how humbling a cancer diagnosis is. I've never felt so terrified in my life. Also for reminding me that other people will wish us well. That brought a tear to my eye.
Thankyou so much
Cat xx
Reply # - January 25, 2015, 12:49 PM
Hi Cat,
Hi Cat,
Just one of those people around the world wishing and praying for you and your husband. Being newly diagnosed is a SHOCKER we learned ourselves. Lots of tears, fears and whys. For us, weeks turn into months pretty quickly and I have to remind my husband and son that I am still here and they better appreciate it! For me, exercise is what keeps me going (stage IV) and actually makes me feel better. Try to get some yourself if your husband is in too much pain to do any. Anxiety is the worst for me at night but I take a Xanax before bed and it helps my mind from playing the bad role that it try's to do. While cooking dinner I also have a glass of wine! Whatever it takes is my attitude.
You have tons of support here so update often. It does help to know people are waiting to hear from you!
Karen
Reply # - January 25, 2015, 09:04 PM
I don't have much to add but
I don't have much to add but would say that the timing of chemo after surgery is often a matter of judgment, but on a protocol it may be specified as a minimum of 4 weeks. After a major surgery, most patients would really need at least 3-4 weeks anyway, so I don't think this is excessive.
Otherwise, I would just add that the minimal change over 11 weeks of follow-up is relatively reassuring, given the situation in which systemic therapy would need to be postponed by surgery.
Radiation may be an alternative, though it would still require time to be administered and then usually be followed by a break for at least a bit before initiating chemo.
Good luck.
-Dr. West
Reply # - January 26, 2015, 12:46 AM
Thanks karen, jim, dr west,
Thanks karen, jim, dr west,
It certainly helps to get a sense of timescales. Yes, it was reassuring a bit not much progression at last ct scan but then we didn't know about his hip. So that is progression I guess. But no new areas on ct other than what was already in lungs. One 3.5cm mass and multiple pulmonary nodules both lungs few mms size i think. no other hot spots on bone scan. But no brain mri done. Well, tbh the hip issue was definitely there at diagnosis. But as we were stunned and didn't know anything about lung cancer we didn't realise to say about mild hip pain. Noone said to report any unusual pains and he often gets aches and pains. Plus he'd been to a yoga class with me and did yank his hip about a bit! So obviously the hip tumor was growing faster. We just had no scans. By the time i suspected something it took 5 weeks to get bone scan. It was a shocker the size of it considering he only takes 2 paracetamol and had been going to the gym.
Thanks for your input. All of you. It has helped me to see this is possible to organise and plan. It just felt like a muddle.
Bless you all and thanks. Now to face this week a bit calmer.
Cat x