Well, my CAT-PET scan of yesterday showed advancement of disease which is now in new, different nodes in my chest, near my windpipe. I think that's the one.
So I'm now switching to Tarceva.
I've been very, very exhausted, very weak, so I hope that I'll begin to recover some of my lost strength. Right now I get winded terribly just getting up and walking across the room.
My doctor says it could be the chemo, or the thyroid problem, but it could also be the cancer, so I may still experience weakness. This would devastate me, as all I'm comfortable doing is laying on the bed or sitting in a chair.
I am not positive for the mutation, so I hope this will work for me. My oncologist does have another patient with the same exact cancer, stage and situation I'm in, actually they have it in their bones too which I don't, and he's been on the Tarceva for 2.5 years and going strong.
I'm praying this will be the same for me.
The idea of not having to sit thorough the chemo, to maybe be able to travel has me a bit happier than I was.
Every cloud has a silver lining I guess.
Reply # - December 17, 2013, 11:17 PM
Reply To: Off chemo – on Tarceva
Just saw in the documents that I got with the Tarceva that I:
"will need to have a blood test every 4 to 6 weeks or before each clinic visit to check that your blood count has returned to normal. If your blood count is too low, it may be necessary to delay your next treatment until your blood count has returned to normal."
No one at the chemo center today told me to have a blood test before I start. But I am experiencing a lot of fatigue, weakness, tiredness, out of breath easily, difficulty walking due to feeling too weak.
Should I have a blood test before I begin the Tarceva?
I'll call the clinic in the morning, but just thought I'd ask here as well.
It would seem to me prudent to have a blood test before beginning the Tarceva.
I could have the blood test tomorrow and get results on Monday.
Reply # - December 18, 2013, 07:28 AM
Reply To: Off chemo – on Tarceva
I'm sorry to hear about your scan results, but hopefully Tarceva will be very effective for you.
It's a good idea to call your clinic about a blood test, but Tarceva does not normally reduce blood counts significantly. As Dr. West has said:
"Tarceva is a completely appropriate treatment after first line therapy, and a study that directly compared second line Taxotere to another EGFR inhbitor (Iressa, which, if anything, is a little less effective than Tarceva in a broad population) showed that they did just as well with either treatment. There is no evidence that going to Tarceva is a worse choice, and it's a very fine choice in someone whose blood counts haven't held up well on standard chemo. Taxotere is quite likely to drop blood counts significantly, while that isn't expected at all with an EGFR inhibitor, so it's a very reasonable idea to take a break from standard chemo with an EGFR inhibitor, give the bone marrow a chance to recover, and then see about going back to chemo after that. " - http://cancergrace.org/forums/index.php?topic=4370.msg26044#msg26044
It may be that the documents you were given are general in nature and directed more toward someone starting a new chemo regimen. You should be able to clarify that when you call the clinic.
JimC
Forum moderator
Reply # - December 18, 2013, 01:03 PM
Reply To: Off chemo – on Tarceva
Thank you Jim, for your response.
Reply # - December 18, 2013, 04:14 PM
Reply To: Off chemo – on Tarceva
I just got an email response to my question about the blood test from Roche:
"Thank you for your enquiry regarding whether you should have a blood test prior to starting treatment with Tarceva (erlotinib). Your request was referred to Roche Medical Information via www.roche-australia.com
The following information appears in the Tarceva Consumer Medicine Information:
‘Your doctor will need to regularly monitor you with blood tests.’
Please refer to the current Tarceva Consumer Medicine Information available from www.roche-australia.com/productinfo.
This response does not constitute a clinical consultation. Roche Products recommends that you discuss your concerns with your healthcare professional who is better able to advise you on your treatment."
So yes, I had the blood test today, and will have another one before I see my oncologist in a month.
Reply # - December 18, 2013, 08:28 PM
Reply To: Off chemo – on Tarceva
That response is really a non-answer, but that's exactly what a drug company is supposed to do: defer (or pass the buck) to the doctor for all clinical judgments. The words in many drug company handouts are often just empty legalese with no actual substance to them.
-Dr. West
Reply # - December 20, 2013, 10:00 PM
Reply To: Off chemo – on Tarceva
The blood results were good, and that gave me peace of mind. Now I know that the fatigue I feel is from either the previous chemos, or the cancer.
Although we met with my oncologist after the latest CAT-PET scan, we didn't read through it together with him. Now I won't see him until Jan 20, and will probably not get to call him over the holidays.
All he told us was that there was another new area of lymph showing up, and I had 'some fluid' in my lung. Then he stopped my treatments and switched me to Tarceva, which I've been on for 3 days now. In the report "the tumor, previously solid, now heterogeneous with central glucose hypometabolism consistent with necrosis." Ok. good. I think. Some lymph seem to have responded to treatment. But I have a new area of lymph nodes showing up. Even though others are appearing to have responded to treatment.
After coming home, we (tried) to read the report, and we find something called "pleural effusion and changes in the R lung parenchyma which may reflect disease involvement." So that explains my wheezing, bubbling on exhaling.
But that's all the oncologist said, "some fluid in the lung." But this is more serious, isn't it? Wouldn't he want to know if it's malignant, because if it is malignant, all I can find about that is terribly negative for me right now.
How serious can this be, and should I be tested to see if it is malignant? The report, the more in depth part, did say more about the pleural effusion and parenchyma, and possible disease involvement. Also said "possibilities include diffuse infiltration or perhaps an inflammatory process."
Could this have been caused by my previous treatments of Cisplatin/Alimta/Avastin?
What should I be doing now in terms of finding out more about this, or should I just wait and see if the Tarceva 'fixes' it?
I'm so lost. :-(
Reply # - December 20, 2013, 10:42 PM
Reply To: Off chemo – on Tarceva
First, I'll repeat a caveat: we really can't offer advice for a question of what someone should do, because that's really transgressing into providing medical advice. Your oncologist or other members of your care team are the people to whom those questions need to be addressed -- we don't know the details of your case, aren't looking at your scans, and are most decidedly not the best qualified to be telling someone we don't know the implications of scans we aren't seeing.
If there is already stage IV (advanced) disease, it isn't clearly valuable to confirm the presence of more disease involvement: if progression of disease is sufficiently demonstrated by imaging, there isn't a clear value to doing biopsies to go from 99% to 100% certain. If it's a more open question, then perhaps it's relevant, but I'm presuming that your oncologist was convinced that the findings were sufficiently convincing of at least some progression to warrant a change in treatment.
Though anything that treats chemotherapy can do just about anything, I would not consider it at all likely that the changes you're describing are related to chemotherapy and Avastin (bevacizumab). Progression of disease is one possibility, but similar imaging findings could be demonstrated by an infection (pneumonia) or inflammatory changes, and if there's significant reason to be unsure what of these is going on, a bronchoscopic biopsy can potentially done to look at the process directly in the lung tissue. But that would be only if there's sufficient doubt as to the cause of the imaging changes.
Good luck.
-Dr. West
Reply # - December 20, 2013, 10:42 PM
Reply To: Off chemo – on Tarceva
First, I'll repeat a caveat: we really can't offer advice for a question of what someone should do, because that's really transgressing into providing medical advice. Your oncologist or other members of your care team are the people to whom those questions need to be addressed -- we don't know the details of your case, aren't looking at your scans, and are most decidedly not the best qualified to be telling someone we don't know the implications of scans we aren't seeing.
If there is already stage IV (advanced) disease, it isn't clearly valuable to confirm the presence of more disease involvement: if progression of disease is sufficiently demonstrated by imaging, there isn't a clear value to doing biopsies to go from 99% to 100% certain. If it's a more open question, then perhaps it's relevant, but I'm presuming that your oncologist was convinced that the findings were sufficiently convincing of at least some progression to warrant a change in treatment.
Though anything that treats chemotherapy can do just about anything, I would not consider it at all likely that the changes you're describing are related to chemotherapy and Avastin (bevacizumab). Progression of disease is one possibility, but similar imaging findings could be demonstrated by an infection (pneumonia) or inflammatory changes, and if there's significant reason to be unsure what of these is going on, a bronchoscopic biopsy can potentially done to look at the process directly in the lung tissue. But that would be only if there's sufficient doubt as to the cause of the imaging changes.
Good luck.
-Dr. West