I have NSCLC IIIB, and was being treated with Gemcitabine/Carboplatin. But they really didn't work with my bone marrow, and my blood counts were so bad that I had to have a 4 week break. I then had one series with borderline blood results, and then a blood transfusion on my off week. Now, after only one more (first week) treatment , another bad blood result. Whites are too low to treat me.
My oncologist is now putting me on Alimta only, once every 21 days.
I got the impression from my doctor that results from this treatment are very good, and he did say that we could probably clear my 5 lymph nodes so the tumor can be surgically removed.
Apparently radiation is not an option for me until my nodes are clear, and the tumor is removed.
I'm in Australia, and Alimta is NOT covered by our health system unless the patient has the reaction which I had to the other treatments that are covered by the health system, and also has they type of cancer that I have.
I just would like an opinion of this change in treatment.
Thu, 08/22/2013 - 04:49
I'm sorry to hear that you continue to struggle with low blood counts. Alimta (Pemetrexed) is another good choice for treatment; one of its drawbacks is it's very high cost, which is reflected in the drug policy in your health system.
But in terms of its toxicity, it tends to be well tolerated by many patients. As Dr. Weiss has said:
"Appropriately selected patients (good renal function, no fluid collections and adequate performance status) supported with B12 and folate tend to tolerate alimta very well, perhaps better than any other IV cytotoxic (traditional/non-biologic) chemotherapy drug." - http://cancergrace.org/forums/index.php?topic=8790.msg69894#msg69894
I hope that you tolerate it well and that it is effective for you.
Thu, 08/22/2013 - 22:45
Alimta is certainly a favored treatment for patients with non-squamous NSCLC. The fact that it is given once every three weeks makes it less challenging to deliver it on a regular schedule. In contrast, it can be quite challenging to deliver a weekly chemo like gemcitabine regularly without missing doses due to low blood counts.
I must confess that it is not trivial to clear the lymph nodes in stage IIIB NSCLC with any chemotherapy, and surgery is generally not pursued or considered a standard in this setting. Even if it might be considered and pursued in some occasional (or, more accurately, rare) cases of stage IIIB NSCLC, it is absolutely not expected that someone will have clearance of their lymph nodes from stage IIIB NSCLC and be able to proceed with surgery, no matter what chemo is employed.
That said, I wish you good luck with your treatment and hope you do very well.
Thu, 08/22/2013 - 22:59
So, why would both my oncologists say that this is their goal? Why would they tell me they are going for cure rather than containment?
Are they leading me on with positive thinking?
Fri, 08/23/2013 - 06:45
It definitely common to run into bloodwork problems with gemzar.
Regarding optimal treatment, it all depends on context. A proportion of IIIB disease may have long-term remission (going for cure) with combined treatment methods. Now, the mainstay of treatment for IIIB is radiation and platinium-based chemotherapy, given at the same time. That said, no forum post can account for all of the nuances and details for a unique patient's presentation.
Staging can be confusing for everyone, but especially for those unfamiliar with it. For example, "T3 tumors" are often mixed up for "Stage III" cancer. Perhaps that is the source of the discrepancy here. These issues could easily be clarified with your oncologist at the next visit. Hope this helps.
Fri, 08/23/2013 - 08:04
I don't know what a T3 tumor is, but I have a tumor in my R lung, 2 lymph nodes in the center of my chest, one on each side, and three above the collar bone.
I was told that radiation is not an option as the area is too large and thus too dangerous. I was also told that if I did, theoretically, have radiation, then the surgery could not be performed due to scar tissue.
Maybe the difference is in how this is treated here in my area, country, and in yours? I don't know. I know my surgeon is reputedly very aggressive. And I'm more than happy to take his advice.
I hope I will be one of the lucky ones. The waiting is the worst part I think. Slipping off the rails of a positive outlook and getting back on takes a lot of energy.
Fri, 08/23/2013 - 18:40
Dr. Creelan makes an excellent point about challenging primary tumors being well in the range of potential surgery. In fact, I wrote a post about this subject several years ago.
I don't think it's necessarily an issue of one country vs. another. The options can be very different based on the individual features of a particular patient and their cancer, modeified by the individual strengths of the people available to treat them. You'll find in the discussion of stage III NSCLC that just about all experts favor an individualized approach that involves multiple specialists...not a rule-based approach.
Fri, 08/23/2013 - 20:04
I'm still confused. Is there anything I should ask my oncologists about that will help me get clarity here?
My surgeon is supposed to be very aggressive in his approach...a good thing because he's so good at it...yet he didn't want to operate.
If you can help me with a question or two for my doctors, it might help me gain a better understanding.
I understand that about the individualized approach, but I'd like to be able to ask specific questions so I can get answers that help me to understand.
Fri, 08/23/2013 - 20:08
I should probably add that my tumor is located in the upper center of my R lung. Not in a location clear of any arteries. Not all the way up, but in the upper 1/2-1/3. I think it's near something like an artery according to the report from the CAT scan. Maybe that's why? Sorry to keep coming back.
Fri, 08/23/2013 - 20:47
I think the main thing to clarify is why surgery isn't feasible. It's very likely that your surgeon is exercising good judgment if he's known to be aggressive and is saying surgery isn't appropriate in your case.
Mon, 08/26/2013 - 15:06
I'm also in Australia, being treated at Peter Mac for about 4 years now. You?
I have been on alimta maintenance as 5th line treatment. Whilst I can't answer your question re surgery I have also been told radiation is not appropriate.
Just had my 10th infusion of alimta and finding it great. No side effects t ll, have even stopped taking the dex, and am stable. Over 8 months now. So if you re being offered alimta I hope it becomes your friend, as it has for me.
PS. Finally updated my profile photo!
Tue, 08/27/2013 - 00:40
I'm glad you wrote!
I looked up Peter Mac, and I see it's in Melbourne. I'm in North Sydney, and my chemo is being given at the Northern Cancer Inst. close to Royal North Shore Hospital.
Although we are different, as I've only begun my treatment in June. I'm finding it all very confusing. Even though I ask questions, and get answers, more questions seem to pop up and I always feel like I have no idea what is going on. Like I'm in a maze.
I am coughing all the time, and I hate it. I'm told the treatment is causing the coughing, but I don't believe it. I feel like I'm just up in the air. I feel like they don't really know anything. That everything is a crap shoot.
I'm confused about why I'm getting a chemo that you got as a 5th line. I don't understand anything except that I am confused! Lol.
I haven't even started the treatment yet, because they needed to let my blood recover. I had a few rounds of the other chem, but my blood was too affected to continue. Hopefully, next Monday I'll have the first treatment with this.
I'm really determined to beat this, but this coughing is just making me so miserable. All I get is an over the counter med and it really doesn't work very well any more. I guess today I'm just not feeling very well. The cough is annoying the heck out of me.
Did you have any side effects from the Dex? I'm also taking Folate.
I don't know what else to write, except I'm (again) glad you wrote.
Stay in touch, please.
Tue, 08/27/2013 - 00:54
I started on the same chemo that you started on. I didn't get good results and then went through some clinical trials.
I am EGFR positive. Have you been tested? Genetic mutations give the doctors good clues as to what will work and what won't, so if you haven't been tested do push for it.
I suspect that they have switched you to alimta because of the blood problems you have had. They will want to give you a treatment that has the best chance of success, but one that you and your body can tolerate. Alimta is a very standard treatment, and gets good results. We are all different, and our cancer and our bodies respond differently. Try to remember the doctors are absolutely on your side!
The information you will get on this site is the best medical information you are likely to get. Another site, Inspire, is a good support site, but with less formal expertise. It's for some, not for others.
I know it's nearly impossible, particularly at first, but the easiest way on yourself is one day at a time. The doctors will be hoping alimta will bring your cough under control, which would indicate it is also impacting on
Send me your email address and we can stay in touch offline.
Tue, 08/27/2013 - 01:15
I just looked at my diagnosis, and I am EGFR Negative. So that, sadly, doesn't work for me.
I apologize, I'm just having a session on the pity pot because this cough gets on my nerves. Actually, it's better when I don't talk to anyone and keep the air flow warm and consistent.
I know the doctors are on my side, and I do understand that they are doing their best and give me all the information that I need.
Please use this email first: firstname.lastname@example.org
I'd love to stay in touch offline.
Tue, 08/27/2013 - 12:54
There's never a need to apologize here for trying to understand your cancer. I get it, you don't know what you don't know but you know that you need to know it. Right? ;) I don't know much about your dx it does sound very reasonable to change you to single Alimta if you can't have a platinum doublet.
I'm sorry I've not responded before but wasn't sure of how I might help. As I've read through your posts I feel that you would most likely benefit from reading some blog posts our faculty doctors have written on the subject of stage IIIB nsclc. I think they will help you better understand and trust your doctors (or not) and give you a point from which to articulate your questions for them. Whether you know it or not you already have asked some of them and that's what I'm basing my choices of links to paste below.
I wonder if the field of radiation is too large because you have affected lymph nodes in both the opposite mediastinum and above the collarbone (supraclavicular). In normal circumstances either place would make nsclc stage IIIB and difficult to plan treatment options. This blog post can help clarify, http://cancergrace.org/lung/2010/08/22/introduction-to-locally-advanced…
While you may not fit into the elderly slot in the following linked post you do fit into the population as not being able to withstand the hits to you blood so therefore fits your profile (note that this was written in 2008 and states that alimta will soon be approved for... Today it's commonly used in treatment as first line 2nd and so on as do many other drugs used in nsclc, http://cancergrace.org/lung/2008/09/07/wird-ps2-adv-nsclc/
I hope this helps and please don't hesitate to ask followup questions,
Wed, 08/28/2013 - 05:58
Thank you for your response to my comments.
I think I am confused because the surgeon that I saw, who saw my PET scan and my biopsy, said to me that he expected my medical oncologist to treat me with chemotherapy and radiation concurrently, and THEN, my medical oncologist told me it's not possible. They both saw the same PET scan. They are at different hospitals, but both have access to the same reports and notes and updates.
So I've been trying to get an answer and all I get is "It's too dangerous." But I totally trust the surgeon's judgement, and have sent him an email asking for his feedback. Knowing he's a busy man, I'll hopefully hear back sometime this week. BTW, his name is Prof. Brian MacCaughan.
I'm trying to get these two doctors to actually either agree on my treatment or tell me why they don't agree.
If I could get an answer to that, I'd feel like I got somewhere. I'm working on it. So I come here to try to get some clarity.
I've read the first blog post by Dr. Pinder, and tried to glean what I can from it.
She wrote "Although abnormal lymph nodes on PET are suspicious, other processes such as infection or inflammation can cause lymph nodes to light up on a scan and most experts recommend that suspicious mediastinal lymph nodes on PET get biopsied to confirm that the patient has stage III disease. This is usually accomplished through a mediastinoscopy, EBUS or EUS. " I was told the affected lymph nodes cannot be biopsied. So, another question arises for my oncologist.
Also, I have not seen or spoken to a radiological oncologist.
Again, thank you for your response. I do feel that until I get some answers from my oncologist, I will continue to feel confused. They have to tell my why they agree or disagree. Is this too much to ask of them?
Wed, 08/28/2013 - 09:37
Management of stage III NSCLC is a multidisciplinary collaboration, and ideally the different members of the team reach a consensus. The general management of stage IIIB NSCLC is not with surgery, though there are surgeons who may be inclined to do surgery well beyond the bounds of standard recommendations. I think it's appropriate to ask them to better explain their positions, but as we've alluded to here and I'll say explicly now, the prevailing standard of care for stage IIIB NSCLC is to NOT pursue surgery, which tends to be very unlikely to be curative but adds a lot to go through and significant risk.
Wed, 08/28/2013 - 10:23
It's not too much to ask for as the patient but it may be too much to ask for between an aggressive surgeon and practical medical oncologist who don't even work together. My husband went through the same scenario 4 years ago. The anatomy of the cancer was different but the first sentence I just wrote could be about him. He ended up not getting the surgery because the surgeon found a metastasis while doing work up but until he actually saw it 30 minutes into the consult he was ready to get together a team of various types of surgeons and do the surgery. I have a hard time explaining even to myself the relief I felt when surgery was no longer an option because it also meant he was also really stage IV and definitely not curable. But another surgery could have debilitated him even killed him without prolonging his life.
Another thing about my situation. My husband did have to have an open thoracotomy just to get a biopsy for diagnosis. However the type of tumor, pancoast, didn't allow the surgeon to take the whole tumor so he had to shrink it first with 5 weeks of chemorads. While his tumor did quite a bit of permanent damage to his shoulder and arm the surgery also has had lasting ill effects for the remaining area of the chest.
I can safely say as I pushed my way through this trying to get an understanding of what was the best course on action I found that most oncologists work very hard at having their patients live as long and well as possible. That's what I believe your oncs are doing. Be as direct with your questions as possible and I bet you'll find that's what they want. Surgeons, do surgery, aggressive doctors do surgery as often as possible. Ask him about the odds of you being cured. It's the only reason to have it.
One thing I do know is that once decisions are made and a direction is taken you will feel better about it and it will be the right decision for you.
Fri, 09/13/2013 - 18:10
Ok, I know where I went wrong now. Why I held the misconception that if the lymph could be cleared, the tumor could be removed.
We saw the surgeon yesterday, and he cleared that up by telling me that he never said that. Then my husband told me that's what he understood after our first visit also, but he didn't want to 'burst my bubble.'
The surgeon must have said something like "If they had been clear..." and I must have turned it around in my mind, missed something else he said, and taken it to heart.
So your were correct all along.
Fri, 09/13/2013 - 22:28
I'm sorry about that being disappointing, but at least it all makes some sense.