My lovely husband, who is a 51 year old non smoker and always exercised has been diagnosed two months ago with stage IV bi-lateral adenocarcinoma (6cm central mass and small tumours throughout his lungs) and has two brain mets. He had 5 days of whole brain radiotherapy in December and started chemo- pemetrexed / cisplatin on January 5th as they were too busy to start it before Christmas. He had no side effects from the chemo first time round, 2nd session is this Tuesday.
He has tested positive to ALK markers, so Crizotinib may be used at some point his oncologist said ( He is being treated at Northampton General).
All his tumours are inoperable (head and lungs).
I am struggling to deal with it emotionally, he has been brilliant!
Just trying to find other people who have adenocarcinoma which has spread to the brain to see if there are other options for treatment.
Sorry to bother you all, but I'm
Desperate and terrified.
Thank you xx
Written by
Rachelhols
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I am sorry to hear about your Husbands Diagnosis. I am glad he is managing to cope with it all. But please do not punish yourself for feeling this way, it is not uncommon. How the carer feels is as important as the patient. There are lots of folk on health unlocked that are or have been in your position. They are a great bunch and although may not have experience of adenocarcinoma, they certainly have the experience of having a loved one with a diagnosis. Remember you can visit your GP as well. It is a positive step that you are looking for some support, and the community here will certainly help you with that.
The targeted therapy that they are talking about is worth discussion at appointments. And again there will be members here who have experience of targeted therapies and will be more than happy to help you.
We do have a helpline available for anyone that is affected by lung Cancer so please do phone if you wish to. And can also send some information to you if you required it.
I have checked and unfortunately at present there is no support group running in your area.
I do hope things improve for you and your husband, and I am sure you will find your strength. but also remember it is absolutely normal for you to feel this way, and by dealing with your emotions as and when required will help you feel more in control.
Thanks very much for your kind email. It is a help knowing that there is support. As a career you feel a bit helpless at times.
We have discussed the targeted therapy with the consultant but he wants to do a few rounds of chemo first then a scan to see how it's responding, I just worry that his treatment is all based on NHS costs rather than what's best, but we just have to go with it and Daryl, my husband, is happy with his treatment this far.
Could you message me the phone number please in case I wanted to call your helpline.
I think you need not worry about the treatment being driven by cost. If a targeted therapy is suitable they will give it to the patients. They do however have to choose the best time to commence on the drug. It is not uncommon for chemo and radiotherapy to be given 1st.
You have made a great decision to try and seek some help from others for yourself, as you said above. The benefits of support are often overlooked.
The Helpline phone number is 0333 323 7200 option 2. This will take you through to Information and Support
Again I am sure the forum will be a great source of comfort and information.
I seem to be in a similair situation to your husband. NSCLC diagnosed Sept 2014. Tested negative for ALK mutation. So no targetted drugs for me. Told inoperable & offered chemo which I refused. Initially it was large tumour in left lung-something suspicious in right & something in middle of chest for luck. I opted fir intravenous Vit C treatment & ozone therapy which I paid for out f savings. It seemed to sort out my right lung & the middle of my chest, but did little for big bad lefty. Also send a variety f alternative therapies as advised by alternative therapist & my own intuition. The best thing about all this was that I had no adverse side effects & looked & felt extremely well. Unfortunately it spread to my brain. I had 13 mets( my 13 little Indians) and a tumour on the optic nerve which caused me to flip my car into it's roof writing it off & losing me my driving licence. It also got me a brain scan.
Decided to gave some chemo fir the brain, but they also threw in another drug for the lung & it seems to have been more effective than the one for the brain. It has halted the brain progress temporarily, but I am told that it will progress and they now want me to have whole brain radiotherapy which I have refused. I live by myself & my main objective is to stay as independant as I can for as long as I can & whole brain radiotherapy would lose me my short term memory & my hair( I did manage to hang onto it through the chemo) plus a whole plethora of ther possible side effects.
For myself, I have had little trouble with the cancer p-apart from my car woes. I do get breathless in exertion and chemo caused me some problems that are now abating. The worst thing I have had is excruciating lower back pain which caused mobility difficulties & I thought was the cancer spreading to my bones. I didn't mention it to anybody as I didn't want any more treatment. When I did eventually mention it, my oncologist said that it wasn't cancer, more likely a herniated disc. Somehow I prefer that to the cancer spreading.
It seems to me that your husband gas more in the way if treatment options available to him than I had & I hope that one or more of these will prove successful for him. What I would like to say to you s that in my opinion it can be much tougher for the one who has to stand by and watch than the one who is 'suffering'. For me, although it has turned my life upside down I seem to have suffered little due to the cancer so far.
The treatment options for Braun cancer seem to be surgery, cyber knife, targetted radio therapy, whole head radiotherapy & chemo therapy. They all have their own qualifying criteria & as your husband has had whole head radiotherapy, probably like me there were too many mets to use a targetted therapy. Perhaps if the treatment is successful they may be able to try one of the targetted therapies. I don't know. Perhaps a conversation with your husbands oncologist or nurse practitioner may put your mind at rest that they are doing all they can. I find it quite bizarre that you gave to ask the questions from oncologists, but it us sometimes diffucult to know the Qestions to ask when you are stressed out & terrified.
Is there a support group that you could attend together? I have just heard if a begun tumour support group that is run by Macmillan. I live close to Brustol, but I suppose they have them elsewhere. I also highly recommend the Penny Brohn centre which again is local to me, but they do residential courses & I believe they have an 'outreach' deoartment for the rest of the country. Google it. Sorry about typos-dome is my eyesight & some auto correct-don't you hate it?
Hope you get some good news regarding your husbands treatment.
I'm so sorry I haven't replied to your kind and detailed message. It must be very tough going through this on your own. Your situation does sound very similar to my Daryl. It's the shock of finding out that he had lung cancer and that it was so advanced. He is a fit, healthy non-smoker and only 51, so it just seems so unfair on him. He is my whole world. I have noticed that there seems to be a lot of younger people on this forum suffering with this terrible disease. On the whole he is doing pretty well. His
main central tumour has shrunk from 6.2cm to 4cm in his lung, his third round of chemo made him feel
More poorly but he coped very well. He has been at work most days, bless him. His colleagues pick him up everyday as he cant drive, which is so kind. We haven't seen the oncologist since he started chemo as he was on holiday then
Poorly, hoping to see him this Friday to talk about Daryls brain Mets and the
Plans for his targeted drugs.
Anyway, how is your situation and health at the moment? Are you on any treatment at the moment?
Hi Rachel, please don't worry about delay, I'm sure you have more things on your mind. I agree, the shock is unbelievable. I'm older than your Daryl. I'm 67 now & kind of adapted a philosophical attitude to the effect that I have nobody dependant on me-not even a little cat currently. My family are grown & the grandkids well on their way. Suppose these days 67 is quite young, but with my family history I'm quite an old lady. I agree 51 is no age, but Daryl sounds as if he is in not too bad a place. What Zi would really suggest us that you ask your oncologist about Nivolumab. They were doing trials that were funded by Bristol Myers Squibb and I believe this gas now been wheeled out to NSCL. Mainly because I was along to a man from Wales who had been treated & it had banged his lung cancer in the head. He also had brain mets which he was using alternative therapies alongside orthodox treatments. I met him at the MS centre where we were both having hyperbaric oxygen treatment. Apart from the fact that there is no 'clinical evidence' that this is effective, the people who use it swear by it and it is reputed to reduce the nasty side effects if chemo & radiotherapy. I was told that a lady with liver cancer was told 15 years ago that she wouldn't make old bones, but she has been having oxygen treatment for 15 years & she is still with us. With regard to Nivolumab, it is an immunotherapy treatment & us available through the early access to medicine schemes which bypass red tape. Please do speak with your oncologist about it.
I think that I've had all the orthodox treatment I am prepared to have. I found it too debilitating for limited benefit it offered me. I'm sticking with various alternative therapies that hopefully will offer me the best quality of life. Now the chemo is leaving my system I am finding some strength returning & I have nearly weaned myself off the steroids which I found created a whole realm of side effects that I didn't like. Feeling better than I have for six months or so-but every day is different on this roller coaster ride we've all joined.
Very Best Wishes for a good outcome for your husband. Apart from treatment options it is amazing what can be acheived with a positive mental attitude.
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