carm

LivewithCancer Expressed that she hoped you saw my posting.

Crystal clear! Thanks a million again. I'll post an update when we get the next scan and genetic testing results in around 3 weeks.

Hi Carm,

Thanks so much for your responses to my questions. I am so grateful to you for your patience with my lengthy notes.

I very much value the advice you've given. I too am leaning in the direction of radiation, but your advice and information has armed me with more facts for the second opinion(s) we'll get once we get the genetic test results and the next scan.

She is lucky in the context of this terrible cancer. To tell you the truth her cancer is behaving so oddly for SCLC (very small and peripheral, very limited and slow spread, no symptoms), that I wonder if the pathology report somehow got it wrong...I know that happens on very rare occasions.

I had thought immunotherapy sort of had a seek-and-destroy way of working that would cause the immune system to act on the random malignant cells hiding out in her body even if there's no tumor, but if that's not the case, it's ok...even if it was an option, I'd lean against it because the side-effects of those are often strange and not fully understood. If radiation is a good option, probably save the immunotherapies for later.

Random question - Why is IMRT typically used on the left side?

I am so scared and feel so punished by all of this. My Dad just died in November, my Aunt in October and 2 friends in December...and now this in January. I don't want to be "hopeful" given how bad the chances are with SCLC, but I do just want to know that I've done everything I can. However, I do sincerely feel thankful for how good everything is within this terrible context. My Mom is living without any symptoms of chemo or disease and is totally normal, other than having lost most of her hair. The future is scary, grim and uncertain, but right now this day everything is great.

Thanks again - you are an angel.

Oh I should also add - my Mom's tumor is (was, actually) very peripheral on her lungs - all the way on the outer edge of the ceter right lobe, and hence her radiation oncologist - way back when he gave us the initial diagnosis - said she would be a good candidate for radiation. The cancer is nowhere near her center or any other organs. From what I hear, that's rare for SCLC, so another way in which we're lucky. Not sure if that changes your view at all toward radiation.

Hi Carm,

No problem about not responding sooner - to be frank, this site's messaging and notification features aren't the best!

THANK YOU SO MUCH!

As to my Mom's overall mindset and health - she's terrific. I know this won't be the same with different treatments, but honestly other than hair loss chemo has had no impact on her. She isn't tired, weak or have any impact to her appetite or digestion. Her mindset is also amazing - she's worry-free and carefree. In fact, I think almost to a fault - I think she would benefit from a little deep thinking about her condition and life, but I'm overall just happy that she is in such positive spirits.

I am going to get some second opinions officially after my Mom's next scan AND after we get the results of her genetic and other testing via Foundation One. That should be most beneficial that the doctors have all the information possible.

Until then, what I'm ruminating over regarding treatments:

I. Trials

I've been looking at clinicaltrials.gov and then the hospitals in our area. I understand that most trials want you off of whatever treatments you've been having for a month or so, but of more concern to me is I haven't found one that will accept an SCLC patient WITHOUT a solid tumor except:

1) Checkmate 032 - Seems to be closed AND based on the title says they want someone with a tumor. Shouldn't that mean my Mom as NED status is excluded? https://clinicaltrials.gov/ct2/show/study/NCT01928394?show_locs=Y#locn

2) Checkmate 451 - Closed https://clinicaltrials.gov/ct2/show/study/NCT01928394?show_locs=Y#locn

3) MERU - Open, but not desirable for a few reasons. 50% chance of placebo, 25% of Decadron which gives my Mom a lot of side effects (why would they be trialing a steroid anyway?), and 25% chance of Rova-T which failed the last trial and seems to produce a lot of side effects.

II. Consolidation Radiation

Actually, for SCLC, this has been mentioned as an emerging option of patients right after or even alongside their first chemo as a means of delaying the recurrence. However, there is some doubt as to how that applies to people with a complete response. For example:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5400661/
https://www.ncbi.nlm.nih.gov/pubmed/25230595
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4483470/

III. Opdivo / Keytruda / Opdivo+Yervoy

My main question here is whether or not this would be given to someone without a solid tumor? My Mom's doctor seems to think NO, but I never read that anywhere. What do you thinK?

Hi Carm,

First off, thanks for all of your help. You've been great. As usual, good work gets rewarded with...more work. I'm sorry to be a pain, but you really know your stuff, so I wanted to ask you a question privately before I update the whole group to get some expert advice.

I spoke with the doctor Friday on an unrelated matter, but she happened to have gotten my Mom's scan results early and shared them with me. Now that I know where we're headed, I want to just get a plan for it.

Great news. No further spread of the cancer, and after just 2 cycles of chemo, she has just one lesion at 5mm (75% shrinkage). So, it's at this rate it's pretty certain she'll be NED by the time her chemo is finished. However, as I've researched so much about this disease, I'm also aware of what usually happens. While on the good end of the spectrum, the cancer is almost certain to come back, it's likely to happen sooner rather than later, and it's likely to be more difficult to treat at that point.

So, in terms of next steps once we get to NED:

1) Radiation - I've seen a few studies that strongly recommend radiation after chemo or alongside the last 1-2 cycles even if the patient has a complete response/NED, but this is not yet standard of care. So far, her doctor seemed not so enthusiastic about this, but to be fair I didn't have an extensive conversation with her about it. Would this be considered consolidative radiation (to be honest, I couldn't even find the definition of that)? In general, she's getting very good care at Columbia Presbyterian, but the doctors their do seem to be very "by-the-book" despite the fact that it's a research hospital.

2) Opdivo / Keytruda Maintenance - I've heard lots of conflicting things on whether or not these can be prescribed off-label for SCLC maintenance. I know they can be used in lieu of or alongside chemo on solid tumors, but is this at all relevant to someone who is NED? Would this really be maintenance treatment option?

3) Clinical trials - I see nothing at all for someone who has SCLC (with or without a solid tumor) except for these below. Do you know of any that I may gave missed?

https://clinicaltrials.gov/ct2/show/NCT03033511?term=Maintenance&recrs=ab&c ond=Small+Cell+Lung+Cancer&cntry=US&rank=2. However, we won't be doing this because you have a 50% of getting a placebo and a 25% chance of getting Dexamethasone (which my Mom has bad side effects from) and a 25% chance of getting Rova-T which just failed badly in clinical. Does anyone know of any other maintenance trials?

I see this one, but it's not yet recruiting: https://clinicaltrials.gov/ct2/show/NCT03406715?term=Maintenance&recrs=ab&c ond=Small+Cell+Lung+Cancer&cntry=US&rank=1

Oh, happy Easter by the way!

I am having a difficult time with all my menopausal symptoms. I never sleep due to night sweats. I’ve tried everything. Now I am starting aromatase inhibitors which will strip my body of my last molecule of estrogen and add more side effects. I feel my quality of life has plummeted. Any suggestions are welcome.

Hi, carm. I just wanted to say how nice it was to see a reply from you to a question that was asked. I have always felt like you are a voice of reason and I have missed your posts. Anyway, nice to "see" you. I hope you are well.

Hi Carm - thank you for your thoughtful, informative reply to my question about chemo brain.

This is somewhat unrelated, but years ago, a friend's grandmother was undergoing chemo. The friend worked for a veterinariam, and showed him some info containing the chemicals in the chemotherapy she was getting, and he said the chemo was identical to sheep de-wormer. I've always wondered about this, and it's certainly not anything I'd ask a general question about on this board, but just out of idle curiosity, do you think this was an accurate assessment?

This morning I've been looking online to see if 'this is it' I've come across your post on a reply to another person. You mention university hospitals and about other doctors doing trails. If you could give me any further guidance, me and my family, including mum, would apreciate it. Thank you....

Hi Carm
I am very confused about prognosis. My sister had 3b lung cancer. Radiation and some chemo followed by a neg pet scan. After showing stroke like behavior, and a hospitalization, we are told she has leptomeningeal carcinomatohas. They are scheduling surgery to drain blood from her brain. Things i have read are very grim. She has severe memory loss as well as significant cognitive behavior changes. Any insight into what we are facing is appreciated greatly.

Hi Carm My DIL had 1 dose of taxol, perjeta and perception, then a week later had just the taxol. her tx tomorrow is canceled due to diarrhea for the last 3-4 days. Her oncologist at Sloan doesn't want her to take supplements or meds except imodium. What are your thoughts on other ideas to ask her oncologist? I was thinking a probiotic but you have the experience to help her. What do you think?

Hello, I have uterine papillary serous carcinoma 3C1, surgery last summer, about to have last cycle of carbo/taxol, then external pelvic radiation in Feb. 2016. What are your experiences?

carm, have you had ovarian cancer too. I am dancing with NED after being treated for agressive stage 4 serous ovarian cancer with mets to liver, lymph, and diaphram. I find your information very helpful and would like to follow you.

lost your email you said lets stay in touch and on phone what happened? funwithmycritters@yahoo.com

Hi Carm,

I have a question for you. I saw my GYN Oncologist this am. I was due for another round of chemo (Taxol/Carbo) today. We talked about my reaction after the first dose and the continued reactions after I came home. He canceled my chemo for today and took me off of the Taxol.

I am scheduled to go back in next week for my second round after it is approved by my insurance. The nurse gave me instructions for taking Decadron the day before and the day after chemo. The paper she gave me says for patients on Taxotere. When I looked up the Taxotere it looks like it is for patients with breast, lung, prostate, head, neck and stomach cancer. Does that make sense to you?

The doctor told me the name of the new chemo drug while I was in the exam room with him, but I was still recovering from the shock of having my chemo canceled so I don't remember what he said. He did say I would take a steroid the day before and the day after and the new med would decrease my WBC so I would come in for a shot to increase my WBC the day after chemo and that is consistent with the prescriptions and injection scheduled for me next week.

Thanks for your help!

Reading some of your old post. Are you ok? Haven't seen recent post from you.

Hi carm,
I am preparing to enter the treatment phase of a clinical trial on August 26th. I could be randomized to Taxol or to MEK 162, and I had a couple of questions about Taxol. After my surgery in late 2011 I underwent IV Taxol, IV cisplatin, and IP cisplatin treatment with the addition of Avastin at the fourth cycle mark. I was kicked out of the study after 21 cycles (only 6 of the Taxol/cisplatin) because my tumor marker (CA 125) went over the upper limit for the protocol. Could you tell me what pre-medications and concurrent medications are typically prescribed for Taxol patients? I remember Aloxi and Benadryl, but I think there was a steroid as well the first time around. Were these for the cisplatin or the Taxol? Here's hoping I get the MEK inhibitor, but it doesn't hurt to be prepared. Thanks - innadoon

I read your response to someone about GIST tumors. Seriously? 1 in 7 million? I had surgery and now am on Gleevac. Im understanding that there is a high rate of return if I dont.

Where is my good friend and how are you doing?

my wife has metastatic uterine/ovarian cancer and they drained ascetic fluid. It seems to be coming back. Is this stage IV?

hello....one of the people on here told me that you might be able to answer some of my questions. My mom was told last march 17th that she had stage 4 pancreatic cancer, the doctor told her with chemo she might live 8months to a year...she had the chemo but it was to much for her. so he took her off chemo and put her on hospice....she is still mobile, shaky but she works at it. her pain is pretty well controlled. but when she has a bad day so do I .... I am very new at this and to me its hard for me to talk to moms hospice nurse because some of the questions I have might upset my mom. Like for instance on Tuesday she slept most of the day but on Monday, Wednesday,and today she did real good. she also told me today that her urine smells like ammonia...I know what will happen but how can I prepare myself for it, are there any signs I can look for...how do I make sure shes not hurting if she becomes unable to talk....does hospice let her stay at home for the duration she doesn't like hospitals and definitely doesn't like nursing homes....sorry for bombarding you with questions but i'm really not sure what to do.

Hi carm.i had a question for you.i was diagnosed with grade 2 oligoastrocytoma.i had the surgery and they removed 90 percent of the tumor from my left frontal lobe. I had no symptoms and it was found by accident. Anyways at this moment all my doctors (surgeon, Nero oncologist, and radiation doctor all suggest waiting and watching before doing anything as far as radiation or chemo.what are your thoughts?

Hello Cam,

I found out I am stage 2B and that the cancer hasnt spread it is just in my cervix. I will be starting my radiation treatments soon. Can you tell me how long will each treatment be ?

Thank you so much for the info and support. It means the world to me that you thought of me and have been so helpful.

Hello My Friend, I hope all is well. How are you?

Hey I just had the cold knife procedure and I am still in pain how long will it take for this to heal. When do you think I will be ready to start working back out.

Hi Carm,
Is it unusual for your eyeballs to hurt/ache a bit while undergoing chemo treatment? Had my first treatment last week and have had a few days where my eyeballs actually hurt..so strange.
p.s Thank you for being there for so many of us with these kind of questions...we cherish your input!
Randelicious

Can you tell me about how long it will take to get my test results back from this cold knife procedure