Cisplatin/Alimta chemo rounds done...on to Taxol/Carbo/radiation

[Kleo]

Hi All!

Just finished up my 4 rounds of Cisplatin/Alimta chemo. Boy that Cisplatin is really no joke. Yeow! Still held my whopping 97 lb weight throughout! Even got up to 99 again before the last infusion! Go ME!

Anyway first scan is in, and tumor has dropped from 5.6 cm to 3.87. SUV Max went from 16 to 4.14 (!)

Lymphnode SUV dropped as well from 4.1 to 2.5.

So we are going in the right direction at least! Next is a meeting with the surgeon who I'm told will want another biopsy of the lymphnode. He will want to make sure it is no longer cancerous before committing to surgery? This may be a dumb question but...if it's ACTIVE, why wouldn't it be cancerous? Also, the TUMOR is still active. Can you remove an active tumor safely but not a lymphnode??

I know....ask the surgeon this stuff....lol      I just cringe at the idea of cutting live cancer. I know it's done alll the time but...freaks me out a little. ( Bad experience with my mom's surgery...lingers I guess)

Anyway...they are tentatively scheduling me for the 6 week Taxol/Carbo/Radiation treatment ...pending the surgeons determination. Or if I say a definitive no to surgery. LOL 

*Tom....I read your blog about receiving this same treatment. I know it's considered "low-dose" chemo when given with radiation. Any idea how "low"? Was it half dose? Less? Ugghhh...if I get thrush for 6 straight weeks I'm gonna be extremely grouchy. Oncologist keeps telling me it won't bother me much. Heh.

 

 

[Judy M.]

Kleo

I also had the 4 rounds of Cisplatin/Alimta combo and heartily agree it was no fun. And I also gained weight. Don't know about you, but they gave me steroids with it and I blame them for the weight gain. Lost it after. Hope you don't. Sounds like you need it. Not a doctor, but going to chime in on possibility for why another biopsy. I had SBRT on my lung tumors and one was a 2.5 "SUV after. Oncologist said he was no longer worried about those tumors. I think a 2.5 is considered to usually be below cancer level. Glad to hear you got good news. 

Judy M. 

 

[Tom Galli]

Kleo,

I can't quantify the concentration of chemotherapy I received prior to surgery.  Both my doctor and chemo nurse told me it was "low dose".  How low? Perhaps some analogous information might help you understand. During my pre-surgical Taxol and Carboplatin therapy, I received one dose per week and the total infusion time was less than 3 hours.  I had a total of four infusion cycles.  During this treatment, I did not lose my hair, did not have any join pain, and had the slightest twinge of nausea.

After tumors metastasized to my remaining lung after surgery, I received the full strength chemotherapy (again Taxol and Carboplatin) and the infusion time was almost 8 hours. I was told infusion need to be slower because of the higher toxicity of the medication.  I lost my hair a day after the 2nd infusion, experienced severe joint pain in every joint of my body lasting for about 3 days, and had real nausea symptoms but nausea was controlled by medication.  I had a total of 6 infusions, one every three weeks, for a total of 18 weeks of treatment.  A second period of chemotherapy given about a year later with the same drugs yielding the same side effects.

I did not experience thrush during my chemotherapy treatments but know those that did.  They spent a lot of time gargling and rinsing their mouth with baking soda as I recall.

From my understanding and experience, one can remove an "active" tumor and lymph node safely.  Your metastatic levels are trending down and that is good.  However, you may find you'll have a post surgical chemotherapy routine scheduled to sweep up any cancer cells in the blood stream.  This treatment is vital and although uncomfortable, it is very necessary.

Stay the course.

Tom

[BridgetO]

Hi Kleo. 

Go YOU for sure! Congratulations on getting through it!  And it's working!

Those platinum drugs are really no joke. They do work, though. Prior to my lung cancer, I had a stage 3, aggressive gynecologic cancer. After surgery  (which included removal of 27 lymph nodes)  I had 5+ weeks of concurrent radiation and chemo. The chemo was cisplatin and was "half-strength". Because stomach and intestines were being radiated, I had big digestive issues and had to severely restrict my diet. The issues with chest radiation/chemo will probably be different, but the platinum drugs are  notorious for causing nausea. Subsequently I had 3 rounds of full strength carboplatin and taxoterre (close relative of taxol). I had a bunch of interesting side effects of treatment.  THe good thing is that I'm alive and well today, after being given a "dismal prognosis".  I'm NED on that cancer, as well as the subsequent lung cancer and the prior breast cancer (both of those were stage 1).  

Hang in there with the treatment, even when it's hard. (Seems like it's always hard, it's just a matter of degree). 

Bridget O

[LexieCat]

Hey, Kleo,

Looks like the treatment plan is working!  I don't think low uptake in a lymph node necessarily means there is cancer that's active there.  But, of course, your surgeon will be in a better position to explain his thought process.  

Incidentally, surgery doesn't usually involve just cutting out the tumor--usually the entire affected lobe of the lung is removed.  I was told that's so the surgery removes any pathways by which the tumor could continue to send out any cancerous cells.  You will probably be given a pulmonary function test to be sure you can tolerate that kind of surgery.   I've noticed zero effect on my breathing from having my upper left lobe removed.  I feel a twinge every now and then when I inhale sharply, but no pain and I'm not short of breath.  The rest of the lung(s) pretty much take over the function of the lobe that is removed.  

Hope you get good news from the surgeon--from what I understand, surgery is always the best course unless there's a reason it cannot be done.  As Tom mentioned, there might be some additional chemo to "clean up," but it would be good to get that tumor out of there and to confirm that the lymph node is history.  

[Kleo]

Thank you all for the replies! It helps just to be able to talk cancer with people who understand and are going through it or have been there!

 

LexieCat....I'm so nervous about the lung/lobe removal surgery. I think I've somehow managed to only read the horror stories. It's so good to hear a positive success to it! thank you for sharing!

 

 

I should probably not google this stuff so much. I'm just freakin myself out. LOL 

 

[LexieCat]

Compared to what I've heard about chemo, my surgery was virtually a walk in the park.  I was back at work in less than three weeks and I had three tiny incisions--it's called VATS (video-assisted thoracic surgery), and it's done laparoscopically.  They can't do it in EVERY case, but it seems to be the common procedure these days.  I find it amazing they can remove a whole lobe of a lung through such a tiny opening, but they can.  The "open" surgery (the traditional, old way) is a bit more daunting to go through, but the results are similar.  

So see what the doctor says--if you go the surgery route, there are a lot of tips we can give you to make it easier. 

[BridgetO]

Hi Kleo,

I also had VATS to remove the lower lobe of my right lung. Mine was fairly easy also. I was released from the hospital the following day with a chest tube in place. The tube stayed for about 10 days because I had a smalll air leak. I was up and walking around the neighborhood in a couple of days,, with a big raincoat on to cover the tube and drain bag. I am doing fine with one fewer lobe!  It's natural to be scared of something you haven't experienced, and any surgery with general anesthesia is serious. But for many of us, as Lexicat says, this one is a piece of cake.

Bridget O

[Susan Cornett]

Kleo,

I started on this path with a lobectomy  (open surgery - not VATS) followed by Cisplatin and Alimta.  Surgery was rough but, for me, worth it. I was back at work 4 weeks post surgery but now think one more week at home would have been better.  For my recurrence, I had the Carboplatin and Taxol, with radiation.  Each combo has its unique challenges.  I lost weight with Cisplatin because of the nausea, but I more than made up for it while on Carboplatin and Taxol.  I was looking at pictures from last summer when I was on the Carboplatin/Taxol and my face was SWOLLEN thanks to steroids.  Ugh.  

Keep us posted!

[Steff]

Kleo,

My mom has old-style open surgery.  She had some issue with her chest tube (doc took it out too early) and ended up having to be in the hospital a few days longer than anticipated.  Of course with any surgery, there is some pain/discomfort, but nothing my mom couldn't easily handle once she was home.  I will agree with the other folks, my mom says it wasn't as big of a deal as we all anticipated.  You will do great! 

Take care,

Steff

[Kleo]

Thank you all for the replies! I'm actually heading in to the surgeon today to discuss my options so it's good to have read your experiences. 

Susan....I'm about to do the carbo/taxol combo I guess combined with the radiation if we don't go the surgery route. It'll be weekly so I am concerned about maintaining my weight. And the dang persistent thrush....lol But I guess if I can manage to do it on cisplatin, this one shouldn't be as tough! I hope. They are telling me that radiation will get bad though about 3 weeks in due to the location of the lymphnode. It's by my esophogus so they say it will likely cause me some swallowing issues. Rats.

Pretty sure this surgeon doesn't do the vats but I'll ask him about it today. But perhaps I could find one that does! Sounds like it'd be worth looking into at least.

 

 

 

[LexieCat]

I think it's definitely worth looking into.  Find an experienced VATS surgeon and get an opinion whether you'd be an appropriate candidate.  As I said, it can't be done in every case--sometimes the location of the tumor or other factor precludes it and the only option is the open surgery.  But given the difference in recovery time and post-op pain, I think it's definitely worth investigating.

And incidentally, robotic surgery is very similar to VATS--my own surgeon said they are essentially the same, it's just a matter of the surgeon's preferred technique (and the availability of operating equipment, training, etc.).

[Steff]

Kleo,

My mom had follow up chemo and radiation after her lobectomy due to the surgeon being unable to remove a cancerous lymphnode that was unknown to be involved from initial testing.  Radiation was concentrated next to the esophagus.  She was told she would have a sore throat but only had a slight one (made better by some sort of prescription throat spray) toward the end of treatment. It was recommended to eat ice cream and popsicles as well.  Ice cream tasted horrible to her, but we did find some fudge bars that helped soothe her throat too.  The sore throat only lasted a couple of weeks and it was never bad enough to worry about it affecting her ability to swallow.  Perhaps your sore throat (if any) will be very manageable too.

 

[BridgetO]

I agree with LexiCat that it's worth getting an opinion from a surgeon who does VATS. If you can have that, it generally has a shorter recovery time.

Bridget O

[Kleo]

Well my surgeon does do the VATS and said that is what he'd be doing. He did say he wants that lymphnode biopsied again. If it isn't cancerous then he will do the lobectomy but if it is then I continue with the radiation/chemo treatment. He said he doesn't cut the actual tumor he'd just remove the entire lobe. So that made me feel a little more comfortable about it. There is another lymphnode involved however but it biopsied negative for cancer so they don't seem to be worried about it...just the one by the esophogus. That one little guy sure is a troublemaker! 

I'm just still on the fence about removing half a lung though!  I can go through all that and still it could very well return or spread. It can do that without surgery too but at least then I won't have lost half a lung. But I do really want that lymphnode removed! Geez I just don't know. 

 

 

 

 

 

 

[LexieCat]

Hey, Kleo,

Don't worry about the "half the lung" thing.  With some illnesses you want to avoid surgery if possible--lung cancer is one where the surgery is considered the gold standard for early stage lung cancer.  If you can remove it, remove it.  Yes, cancer can return and spread, but that's true no matter what you do.  Your chances are significantly better with the lobectomy.  And if you don't currently have breathing issues (COPD or something), then you are unlikely to experience ANY breathing-related problems as a result of surgery.  In fact, my breathing actually improved after doing the breathing exercises and starting to take daily walks right after.  My surgeon had one patient who was able to run a half marathon less than six weeks after lobectomy.  (I can't run around the block, but that was true all my life.)

 

[LexieCat]

Here's an article about lung cancer surgery--note that surgery provides the best chance for a complete cure of lung cancer: https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/surgery.html

[Kleo]

Well they did say I showed signs of emphysema and COPD. But I did have the pulmonary test already so I must've passed. LOL  Thank you for the info LexieCat! 

 

 

[LexieCat]

My scans show mild emphysema, as well--probably attributable to my years of smoking.  But even with that, it didn't really faze me.  Chances are, if you passed the lung function test, you won't have any problems.  That's why they do it.  If you were likely to have breathing problems, they might remove less of the lung or use cyberknife (radiation) or something instead.  But those are considered "next best" to surgery in terms of removing/curing the cancer.

[Steff]

Kleo, my mom has COPD with emphysema. Her emphysema was mainly in the upper right lobe. This was the lobe that she had removed. She actually breathes better now than she did prior to the lobectomy!