Switching to Alimta - 1258728

borntosurvive,

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.

JimC
Forum moderator

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.

-Dr. West

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.

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.

-Dr. West

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.

Good luck.

-Dr. West

Hi Borntosurvive

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.

Gail

PS. Finally updated my profile photo!

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.

Gail

Hi born,

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,
Janine

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.

Good luck.

-Dr. West

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.

http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

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.

I'm sorry about that being disappointing, but at least it all makes some sense.

-Dr. West