Possible recurrence.. Adenocarcinoma - 1247034

lrr147
Posts:14

I was just looking for advice/information/guidence really,
OK I'll make this as brief as I can: My husband aged 38 (a never smoker) was diagnosed last August with Stage 3a NSCLC (adenocarcinoma) - He was T2 N2 M0 (pathological staging p2a n2 m0) . He underwent a lower lobectomy (right lung) in September last year. Follwed by 4 cycles of Cisplatin and Vinorelbine alongside 6 weeks of daily radiotherapy. So fast - fowards to now... his ct scan in March noted lung nodules- comment was unlikely to be significant, Ct scan in june ( we have only just got our hands on the report- no one would let us see it! ) says Multiple nodules especially in the in lower left lobe, which have grown from 2mm-7mm between the 2 scans March and May. The Radiologist comment says; 'that this growth suggests these metastatic sites' and the concluding comment was 'increasingly suspicious for Metastatic deposits'. When we saw the Oncologist in June he didn't tell us the nodules had grown and just said they would re-scan in 3 months. We are having the repeat ct next week and meet with the oncologist the following week...
Having only just really found out what the consultant radiologist has written should we be asking for a PET scan? We just need some advice on what happens next. I also know no-one can tell us but would the nodules have really grown for any other reason? Would the Consultant Radiologist have said this without some degree of certainty- should we have really sat here waiting for 3 more months? We have a young family and just need to know but also want to make sure we get the most out of our Oncology team who are can be quite vague - but we want to go into our next appointment making sure we ask all the right things... and are not fobbed off for another three months...its a long time to worry like hell! Any info is greatly received thanks
Forget to say the pathology report from surgery showd he was Egfr and ALK negativ

Forums

catdander
Posts:

Hello and welcome to Grace. I'm very sorry that such a young family is dealing with such difficult issues.
I will ask one of our faculty to respond to your question. As you know they can not offer advice but may be able to give you the information you need to better understand the situation.
Until then let me say that most doctors would watch a sub mm cm nodule and yes it can indeed be something other than cancer. I certainly hope that is the case.

You should hear from one of our faculty by days end.

Best to your family,
Janine
forum moderator

Dr West
Posts: 4735

I don't think that I would have glossed over findings that are so suspicious for progression, but if they aren't associated with symptoms, there isn't a clear urgency to treating the nodules now vs. 2 months ago or 2-3 months from now. I'm not saying that it isn't helpful to know what's happening, but it could be said that the only thing that knowing about metastatic recurrence earlier vs. later provides is an opportunity to know (perhaps worry, perhaps prepare -- perhaps both) and to start treatment associated with side effects before there are any symptoms to treat.

The only way to be completely sure that this is recurrent is to biopsy one of the nodules. However, in a situation in which the findings are overwhelmingly consistent with recurrence (such as several growing nodules shortly after surgery in a patient at high risk for recurrence), I think many people would be inclined to offer treatment for recurrent/metastatic NSCLC once the evidence was overwhelming that this is cancer -- whether that is after a biopsy or after several consecutive scans that demonstrate interval progression.

I'm truly sorry you're in this situation. It's absolutely unfair. The only other thing I'd add is that it might be worth checking his cancer for a ROS1 rearrangement, which is pretty darn rare, but it could provide a treatment opportunity if he happens to be positive, and thus far it's been seen primarily or exclusively in never-smokers with an adenocarcinoma and no other driver mutation. You can learn more about that here:

http://cancergrace.org/lung/2012/01/06/ros1-pos-pts/

Good luck.

-Dr. West

lrr147
Posts: 14

Dr West

Thank you so very much for your reply. Your post has possibly been the most helpful information we have received to date throughout all of this.

I think you maybe you’re right, I think the Oncologist may have not told us to try and protect us from further worry at time when worry has clearly been present for such a while now- although in some respects it felt like they were just hiding something from us... sometimes it feels that because they mostly deal with older people they forget those of us who are younger- do want to know all the information and have the mental capacity and intelligence to process it properly too (as I am sure most of the older patients are too) - but that’s a whole different story. What I do feel a little peeved at is- Had we known all the information, we might not have left the Dr's consulting room as happily to come back in 3 months as we did.. or at least we would have certainly had many more questions. But at least we can prepare well for our next appointment now, Ultimately we are both realistic and know the cancer is more than likely to make a reappearance... after all it was in 7 or the 9 mediastinal lymph nodes sampled during surgery too- we are now beginning to think surgery wasn't the best option after the changes it has made to my husband’s quality of life of this last year.. Possibly for no gain whatsoever.

Just Thank you for your words. We will have a look into the ROSI information, as we're in the UK.. not sure how if we'll have any luck.

But thank you for your message and keep up you great work... Lung cancer needs people like you fighting our cause

certain spring
Posts: 762

Good morning lrr147. I wanted to chime in just to offer support for what must be a very difficult situation, for you as well as for your husband.
I am in the UK too. ROS is very new as well as rare, and we tend to be at least 2 years behind the US. Crizotinib - the "targeted" treatment that might work for someone with a ROS mutation - is not yet available on the NHS, although patients can get access to it through clinical trials.
I have not yet heard of anyone testing for ROS here, but it would be worth asking the oncologist if the hospital lab which did the EGFR/ALK testing for your husband could test for ROS as well. If you draw a blank with him/her (and they may not know what you are talking about), I would suggest ringing or emailing Cancer Research UK (they have a nurse-led information helpline, 0808 800 40 40) and asking if they know of a lab that can do it. But you will still have to get the oncologist to order the test.
Overall, I don't think the ROS testing is as important as getting a more pro-active oncologist for your husband. You are entitled to a second opinion and it sounds to me as if that would be worthwhile - ideally at a big teaching hospital where they do a lot of research. Your husband's GP should be able to help find a consultant and arrange the referral. Ideally you want an oncologist who specialises in lung cancer ("thoracic oncologist"), not a general oncologist. Someone who is up-to-date with recent research and possible clinical trials.
One of the doctors on this site wrote a good post on getting a second opinion:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
Very best to you and your husband.

lrr147
Posts: 14

Certain Spring,

Thank you for your reply too.

I spoke to my husband about a second opinion and he's not sure- not sure they will tell us anything different. What I think we are both agreed upon is that we need more information at our next appt with the Oncologist and if we don't get that information maybe we ned to revisit a second opinion then.. although I think it may be worth getting a second opinion.. aftter all our Oncologist works for a large university teaching hospital... but we have had millions of issues with all sorts of things.. and to say my confidence isn't high is an understatement.

This cancer stuff is just nightmare after nightmare and you always think the next point brings certianty and answers and it never does.. but we are most definitely going to ask about ROS1 testing. I think the hard part is dealing with our children 7 and 9, but so far the honest approach seems to be working... although its heart breaking hearing them talk to matter of factly about cancer and all that it beings.

Scan is next week and Onc appt the week after so no doubt I will drop by with an update.

Thanks

certain spring
Posts: 762

I completely sympathise - the whole experience can be bewildering, and I know what you mean about not getting clear answers. I have found that the specialist lung nurses can be a big help - they work closely with the consultants and go to all the relevant meetings, but are generally more accessible and easier to talk to than a busy oncologist. Could you ask for one of them to be present at your husband's appointment? We've found that helpful, especially in clearing up any confusion afterwards about what has been said and what it all means. I think you're right to be explicit about what you want to know. My own doctors, even the ones I like and trust, are not very good at spelling out their thinking.
Please keep us posted. This must be a big strain on you as well as on your husband. Best wishes.

lrr147
Posts: 14

So we met with the Oncologist... after what felt like another lifetime! and yes, as we expected the nodules had grown. and there is more... and yes they will assume its cancer.. So the Onc recommends he starts Tarcevea next week! We sat and thrashed out the Docetxel V's Tarceva debate and the onc said if it was him he would go with Tarceva.. so that it seems is what he'll do.

Told the children 8 and 9.... they as always took it in their stride... then went for Pizza!

certain spring
Posts: 762

Pizza never fails ... but sorry to hear about the progression.
One of the great things about Tarceva is that you no longer have to trail to the hospital to be hooked up to an IV. Taking a pill every day is quite liberating - you can have more outings/trips. And it does not affect the immune system so you don't have to live in fear of people with colds etc.
May I suggest you stock up on a) immodium (loperamide) for possible diarrhoea, and b) stuff for the Tarceva rash if/when it comes. E45 or Doublebase are useful to stop the skin getting dry, but above all I would suggest asking the GP for a prescription for clindamycin lotion (not cream) in advance, as the skin can get infected with the Tarceva rash (nasty spots, in effect). The key thing is to get in early and not wait until the horse has bolted (said with feeling!). Of course your husband may have no problems at all - some people don't - but forewarned is forearmed.
Did you ask about the ROS testing? I was wondering what reaction you got. And have you asked about clinical trials?
Best to you and your husband - hope you are holding up OK.

Dr West
Posts: 4735

I'm sorry to hear about the progression.

Yes, I routinely give Imodium (loperamide) for possible diarrhea and both an antibiotic skin cream (Cleocin T gel, specifically) and hydrocortisone cream for the rash to everyone I start on Tarceva (erlotinib). Good luck with it.

-Dr. West

lrr147
Posts: 14

Certain Spring and Dr West,

Thanks for the info for the Tarceva side effects- made of note of and will ask when we collect the drug on Monday.

Certain Spring- we asked about ROS testing, and drew a blank but they are sending sample (s) of his tumour removed last Sept to Cambridge.. for testing for I think the Onc said EMA ALK??? Maybe I didn't hear right... and if that comes back positive then they will sdtop Tarceva and change to something else- but I have already forgotten the name of.

So now we're planning a family holiday too...

Dr West
Posts: 4735

That's EML4-ALK, and you'll find plenty of information on that here. If that is positive, which is the case in about 4% of NSCLC, then it's highly suggestive that the oral targeted therapy XALKORI (crizotinib) will be very helpful against the cancer.

-Dr. West

certain spring
Posts: 762

That's funny - lrr147, you said at the end of your first post that your husband had already tested negative for EGFR and ALK? Nonetheless I think that's a good sign, suggests your husband's medical team are on the case.
I was wondering whether the oncologist has ever mentioned a chemotherapy drug called Pemetrexed (Alimta)?
Holidays are the thing. Sun can be a problem with Tarceva so your husband may need a hat and high-factor sun cream. Or have your holiday here :)

lrr147
Posts: 14

I don't know .. anymore.. I am totally confused- we have his pathology report from the surgery and it says ALK and EGFR negative... would that then mean that EML4k-ALK is too? .. The Onc..literally was flying by the seat of his pants yesterday despite the notes having urgent stuck across the front- ( felt a bit sorry for him as we threw questions at him like it was Mastermind!) it seemed no-one had reviewed them prior to seeing us... and he literally called the team out of the room in front of us..I Hate all of this I am a graudate and so to is my husband from highly repsected universities and although are are not he most intelligent people in the world, we are both intelligent peope and I feel so lost in all this world of cancer.. I just wish Cancer came with a guide book or at the very least a flow diagram!

Holidays wise I know what we are talking about ... our children would love to do New York so we are thinking maybe over thanks giving.

Dr West... have you ever thought about coming to the UK.... I think they might need youy here...!

Certain Spring.. Hope you're doing OK..?

Dr West
Posts: 4735

Yes, EML4-ALK is the same as "ALK".

I did spend a year in the UK (Cambridge) and might someday find my way back, though what really intrigues me is London, and I don't think I can afford it.

-Dr. West

certain spring
Posts: 762

I agree that it is horribly confusing, and you cannot be expected to have all the information at your finger-tips. I completely sympathise about the unpreparedness (theirs not yours). I have had similar experiences. Just let us know if we can help. And yes, I am OK - thank you for asking.
ALK is a rare genetic rearrangement that means the cancer may respond well to a drug called crizotinib (Xalkori). ROS is something similar, though even more unusual and only recently discovered. Alimta is a chemotherapy drug that is used for people with adenocarcinoma.
Dr West, you would of course be welcome any time!

lrr147
Posts: 14

I thought it would be worth an update on things here:

My husband took the Tarceva- September - January- two scans showed continued progression, which is a bummer, but in light of the fact the testing for the EML4- ALK test came back from Cambridge (when our local hospital first result came back as no result and all the pathology results originally from surgery showed EGFR and ALK negative) as a positive so, we are just awaiting news on if we can get funding from the NHS for Crizotinib... here's hoping.. we're really hopeful this could actually make a difference to him, we know it won't cure him but more time is the next best thing.. time is so precious with the children!. He'll be the first EML4 ALK positive our trust have had.. so he feels a bit more special now! He's just off for a bone scan today.. he's experiencing a lot of pain in his right shoulder- could always be nothing, but I guess equally it could be something- so it's better to get it checked I suppose.

Take care all

Laura

certain spring
Posts: 762

Laura, I could not be more pleased to hear this news.
You should be able to get it on the NHS - we recently heard from a lady who was on Xalkori courtesy of the Cancer Drugs Fund, which is regionally administered:
http://cancergrace.org/topic/xalkori-is-6-week-scan-too-early
Your husband might also be able to go on a clinical trial (for which Cambridge is one of the sites) testing crizotinib against chemotherapy:
http://www.ukctg.nihr.ac.uk/trialdetails/NCT01154140
Or his oncologist may be able to obtain it through a research budget, especially if your husband is the hospital's first ALK patient. If this is Addenbrookes, as a research and teaching hospital they need to get experience of crizotinib!
My best to you and your husband. I was having a bad day today but this has cheered me up.

lrr147
Posts: 14

Hi Certain Spring,

I'm sorry you're having a bad day.. but glad our hopeful news chered you up- people thought we were strange last week coming out of the Oncology appointment feeling much happier than when we went in- obviously we wish the cancer hadn't grown... but hey this is the first time (we feel) that the treatment odds are almost on our favour..... The oncologist is applying to the Cancer Drugs Fund in the hope they will agree this for us.... it feels almost a priviged place to be.... hope is an amzing thing! Science is amazing..... but hope is even better!

catdander
Posts:

Hi Irr, I've read your story but since you were in such good hands with certain spring and Dr. West there wasn't a need for me to pop in. But I am now...to comment on hope. It takes a special perspective to be happy about a cancer caused by a mutation. I'm very happy to hear your husband will be able to try a drug with so much promise of a good long response.

I'm hopeful for you two too,
Janine

katenz
Posts: 22

Hi Laura, I'm the one who got the crizotinib thru the cancer drugs fund about 6weeks ago. Just wanted to wish you all the best in getting it too. I'm the first one at my trust to be on it too... A dubious honour! Do you mind me asking whereabouts in the UK you are?
Cheers, Kate

lrr147
Posts: 14

Hi Janine and Kate,
Janine-it does take a special perspective to be happy about the mutation, but since there really hasn't been a lot to be happy about in all of this-it feels a good place to be at the moment.

Hi Kate, We're in Bristol. I think I read you are in London so how long did you wait for the cancer drugs fund? And how are you feeling on it? My husband is like you a never smoker..and is 39-although the big 40 is looming.

Take care everyone

Laura

catdander
Posts:

Laura, As too often is the case I was vague in what I said about perspective. I think everyone dealing with this disease, including us loved ones, know the perspective of being happy about the prospect of a good treatment in the light of all the bad prospects.
In other words, it may sound odd to the many people outside the cancer world to hear how happy we are about your husband having the ALK rearrangement but with the perspective of those of us on Grace we celebrate his findings and your and his persistence in getting the tissue properly tested.

Hopes for a good long response after what I'm sure is certain access to xalkori,
Janine

lrr147
Posts: 14

Hi All,

Well I'm back- sorry for the lack of input in recent months.

Initally Crizotinib worked- the 6 weeks scan showed really significant results- some tumours had even become invisibule on the CT - however, the next scan showed that these filled back in and there were new ones- more of the little buggers! A bit of a shock to all after the postive first scan result-. So the decision was made to rescan we are now just about the have the re-scan- we are realistic that, the Crizotinib will not have suddnely worked again- so I was wodnering if you lovely people may be able to help us a bit: My husband (40) had surgery Lower lobectomoy right lung Sept 2011- then had Cisplatin and Vinorelbine -4 cycles and concurrent radiotherapy for 30 ish sessons. The 6 month post treatment scan showed recurrence - he then went onto Tarceva- which did nothing, then Crizotinib. We are in a quandry and our oncology team have expressed a difference in opinion about what might be next (one said Carboplattin - which surprised us after haing already had cisplatin and one said Docetxal)- so I was wondering what our real choices might be for a next shot - we know we're only buying time, but time is good, when you have two young children .

I've probably waffled on a lot here but if anyone has any experience and or suggestions of what might be next, we'd love to hear them we need to make sure we are happy with the next step and we can only do that, when we know what the choices might indeed be.

Many thanks

Laura

catdander
Posts:

Hi Laura, I'm so sorry your husband has progressed on crizotinib. One standard next step is to move to chemo second line with the first choice for non squamous being alimta. This is the blog post most referred to for that discussion, http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

A second line of platinum isn't usually recommended because of the hypersensitivity that builds up and often causes extreme reaction. This thread describes it, http://cancergrace.org/topic/carboplatintaxolavastin-combo

Finally, a second opionion can go a long way in finding other trial options, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

Please don't hesitate to ask more questions after you've read through the links I've pasted. I think the links may help hone your questions a bit.

I hope your husband comes up with a plan that both stabilizes the cancer growth and keeps in the middle of family life.
Janine

Jazz
Posts: 279

Hi Laura,

I too am sorry crizotinib didn't give your husband a longer run. Has there been any discussion of Alimta/pemetrexed? ALK positive folks seem to do quite well on it, if a return to standard chemo is what you're looking at. Is there any possibility of trying one of the newer agents on trial for ALK+, such as LDK378 ? I hope the medical team can get moving quickly and restrain your husband's progression right away.

Unfortunately, our beloved Certain Spring is no longer with us to offer her pearls of wisdom on UK resources :(

Very best to you and your husband. I hope you'll keep us posted.

Jazz

Dr West
Posts: 4735

For those with an ALK rearrangement who have developed acquired resistance to crizotinib, there are several second generation ALK inhibitors that have shown impressive activity. These include LDK378, AP26113 from Ariad, and Chugai/Roche's CH5424802. In addition, a class of agents called "heat shock protein inhibitors", or HSP90 inhibitors have also shown particularly promising activity in NSCLC with an ALK rearrangement and may be a particularly promising clinical trial option if one is accessible to you.

Though chemotherapy, potentially with continuation of crizotinib, is an option in this setting, a clinical trial with a novel agent such as the ones I mention above are a leading consideration in someone with an ALK rearrangement who develops acquired resistance to crizotinib.

Good luck.

-Dr. West

lrr147
Posts: 14

Hi All ,

Thanks for the wonderful replies.

I am so sad to read that Certain Spring is no longer with us... so so sad. My thoughts are definiitely with her family and friends.

I've had a quick look at the links and feel a bit more like we can dig a bit deeper aroiund on our own and arm oursleves with rela choices, ready for next week.It seems a little bit to me, that, there is a much of a muchness in terms of efficacy in many of the more traditional options. No-one has mentioned Alimta and I hope in many ways that they avoid platinum based anything my husband was so so sick on the cisplatin- almost loosing 30kgin weight over the 4 cycles- he wasn't anymore than about 84kg to start with and at 6foot 3' it was a scary time! It also seems to me, that being in the UK could be a big disadvantage to us- I couldn't find anywhere with trials for the therpaies Dr West mentioned- perhaps in time we will.

Again, thank you so much - I may have more questions over the next few days.I hope nobody will mind if I pop back with them.

Thanks again

Laura

catdander
Posts:

Laura this is one of the blog posts written on the subject of alimta and alk rearrangent
http://cancergrace.org/lung/2011/09/07/alimta-for-alk-pos-nsclc-lee-jto/

It is my understanding that like in the US in the UK many oncologists are open to discussions between patient/family and doctor. It seems to be a matter of personality. Also it seems that if I engage in dialogue with the doctor then the doctor is more likely to discuss options and consider the patient/family perspective even if it may not be his/her first mood of decision making. In other words, force your opinion and knowledge with respect for the doctor's knowledge and experience.

Ask and share as much as you like.:)
Janine

Dr West
Posts: 4735

I think it will be worth exploring the possibilities with your doctor. There are certainly a wide range of trials, and quite a few are made available in different parts of the UK. Good luck.

-Dr/ West

lrr147
Posts: 14

We are definitley going to have a long chat with the oncologist and perhaps take a week and then go back to him with more thougths and questions.... I am not sure if that is the right thing- It just feel important right now to make the 'right' decision.

I don't expect anyone can really answer this but would be be beyond expectation to think that the Crizotinib has suddenly started to work again? I just wonderd and its easier to ask you guys here who have some exepreince/knowledge of the drug.

Dr West
Posts: 4735

It's not at all likely that it would begin to spontaneously work better after a cancer has become resistant to it. This can perhaps happen if a patient has been on a long treatment break, but it's very unlikely otherwise.

Good luck.

-Dr. West

lrr147
Posts: 14

Just to update:

There was, as we expected progression- and the oncologist advised we went back to pemetrexed and carbopltin..... he baiscally said he had nothing else to offer- so I guess that it was we accepted! Not sure if we are feeling totally comfrotable, but my husbands view is - we can always stop if its too much.

JimC
Posts: 2753

Just a couple of thoughts regarding the new regimen: Was single-agent Pemetrexed discussed? Since platinum is not usually repeated for the reasons Janine mentioned, pemetrexed is often used that way in second-line and later lines of therapy.

I don't know how it works in your health care system, but if it's possible to get a second opinion another oncologist may suggest other alternatives, including clinical trials as Dr. West mentioned.

Good luck with your husband's next treatment regimen.

JimC
Forum moderator

lrr147
Posts: 14

Hi Jim,

Thanks for your reply. The oncologist was very vague- a huge frustration of mine.... they never seem prepared for the conultation in any wya shape or form... given that we had been expecing this - i'd thought they might have had a plan. He started off trying to convince my husband to carry on on the crizotinib (alone) - becuase the drug comapany wantde him to....! then he waffled on and moved on to the pemetrexed only, then sudddenly decided to add carboplatin in... and when we asked about the info Janine posted- he said oh well he had the cisplatin nearly two years ago now!

I totally feel as though we should seek a second opinion... but my husband really isn't so sure. but my thoughts are even if they just confirm the same as the oncolgoist we have seen then at least i'll feel better,,, he had no knowledge of any of the trials Dr West mentioned and that worried me.... is it a bad thing no to trust your oncologist?

Sory to be a pain here

catdander
Posts:

You're not a pain but it sounds like your husband's doctor might be. I'm very sorry about that. One of the difficult positions for loved ones is we aren't the ones making decisions. My husband began to appreciate my input when his onc started engaging me in conversations about lung cancer. But decisions aren't mine and I feel very lucky that D is doing so well and is doctor is quite good at knowing his patients. He even asked in frustration, when making a treatment decision, "Do you have any idea how different the 2 of you are from one another?"

Unless I'm mistaken the problems with hypersensitivity show up during infusion. Ask one of the nurses and let them know he's on his 2nd round. You'd be surprised at how far you can get by making connections with them, they are incredibly wonderful. Being 2 years out might be helpful too, but there's no data that proves that and is why most oncs stear clear.

Dr West
Posts: 4735

I think it's very appropriate to pursue a second opinion, especially if his current oncologist isn't specialized in lung cancer. A second opinion will either provide a corroborating perspective, in which case you'll at least have the reassurance that there are no great options being overlooked, or you'll get some ideas for alternatives. Getting a second opinion, especially in the high stakes setting of cancer, is something that doesn't imply that the current physician is sub-par, and most physicians don't take it personally at all, if that's an issue your husband is struggling with.

Good luck.

-Dr. West