Update on mom - 1247639

bh
Posts:66

Mom had her chemo (7th round) of Alimta in early April. Doc ordered two x-rays after, last one was in August,her lungs were completely clear, the onc told us it was as clear as the doc's and ours. So for now we are on a hold and see mode. She is scheduled for an MRI in early October. She has been slowly regaining her speech (from her stroke), talks like a toddler but we can understand her. Today she is feeling light headed (only when she is laying down) and asked me very clearly if it could be a "brain tumor like that of Teddy Kennedy". I was happy she could say it so clearly but scared of the brain tumor part. Planning to email the onc to see if this warrants an office visit or move up of the MRI.

I am so sorry I have not been able to visit the forum because of other things going on with the family, daughter's graduation, move cross country, quick trip to India, etc. It was a good thing in a way to have taken my mind off mom's cancer but this is the first place I visit when I am scared about it. Dr. West and all the forum members, you are always in my prayers everyday. Thank you for doing a wonderful job and for all the support you provide for everyone.
BH

Forums
Full Archive

Reply # - September 4, 2012, 08:25 AM

double trouble
Posts: 573

Hi BH. I'm sorry to hear about the dizziness and I hope you get an answer soon. Our minds can take off into some very scary directions if we let them. I always try not to worry until I have something concrete. Easier said than done!
Please keep us posted on what you find out, congrats on your move (whew! lotta work) and I hope you enjoyed India!
Debra

Reply # - September 4, 2012, 01:37 PM

Dr West
Posts: 4735

Thanks so much for the update. I just really wanted to say good luck...

Dr. West

Reply # - September 4, 2012, 04:11 PM

bh
Posts: 66

Thanks, Dr. West and Debra for the good wishes. She is undergoing a CT scan as I type this, her primary wanted one right away as she is continuing to feel dizzy and has blurred vision. Her BP is a little elevated and her sugars are up at 298 (they have been under control since April after the decadron scare). Keeping my fingers and toes crossed that it is not brain mets.
Thank you again.

Reply # - September 5, 2012, 07:03 AM

bh
Posts: 66

Just wanted to give a quick update. Mom's doc called last night, her CT scan was clear so her dizziness is not related to anything except her elevated BP, phew! He also adjusted her diabetes meds (she was not a diabetic before the chemo). So keeping toes and fingers crossed that she remains NED for a long, long time if that is what she currently is as the docs have not told used that particular term.

Debra, how are you? I didn't move cross country :) helped my daughter move. India was a lot of fun, also made a quick trip to Thailand on the way back which was really enjoyable. I visit the forum often and read the posts but have not gotten the hang of navigating the new site yet. Good luck with your tests on the 20th.

Reply # - October 2, 2012, 03:45 PM

bh
Posts: 66

Mom had her follow up CT scan yesterday. I called the doc for results but the oncologist would like to discuss the results in person at the Friday appointment. Mom's primary called in with the results - nodule in her left lung remains the same, no change, no fluid in her lungs, no bone involvement but there seems to be an increase in her lymph node swelling. I am not sure what this means. She has been on a chemo break since April so does the lymph node swelling mean the cancer is present elsewhere? They have never done a PET scan on her and don't want to do it. Her primary seemed happy at the results. Should I ask for a round of Alimta? Does one round of Alimta do any good or does one need all 6 rounds for efficacy?

Health wise, mom is doing great, she attended a wedding with us this weekend, sings, complains, cooks with one hand and her speech is slowly improving. Her only gripe is that she has had extremely loose motion everyday since a month, only once a day so I have not given her any immodium for it as the frequency doesn't seem alarming.

Reply # - October 2, 2012, 07:19 PM

Dr West
Posts: 4735

With a reassessment after a chemo break, I think the key question is whether the progression is "clinically significant". What that means is in the eye of the beholder. I need to look at the scan, and it also depends on how well or poorly the patient has tolerated chemo/prior treatment in the past, as well as their own attitude about whether they want to do more chemo sooner, later, or not at all.

It's not to say that there are formal rules here, but in general, if we decide to start or restart chemo, we'd generally do at least 2-4 cycles. If there's enough progression to justify treatment, it probably necessitates more than one cycle of treatment.

Finally, I'll say that it certainly depends on the context and seeing how much progression there really is, it sounds like the progression probably isn't enough that restarting treatment right now is definitely needed.

-Dr. West

Reply # - October 3, 2012, 07:09 AM

catdander
Posts:

Thank you Dr. West for your input. I would certainly have the same questions if D were to have similar results in his upcoming scan at the end of October.
Janine

Reply # - October 3, 2012, 08:57 AM

bh
Posts: 66

Dear Dr. West, thank you so much for the information. I will be reasonably informed to ask the doc on Friday. Mom's primary who gave us the info was very pleased and didn't seem worried at all.

Mom has tolerated the Alimta pretty well, gets tired for a couple of days but is willing to do the chemo again if necessary. Do we need a PET scan to see where the cancer is? Does a lymph node swelling necessarily mean there is still cancer elsewhere inspite of the fact that her lungs look okay except for that tiny nodule? I think the CT on Monday included her abdomen area and they did a CT of her brain a couple of weeks ago, all normal. If she has responded favorably in the past to Alimta, can we expect that the efficacy to the drug will still be there or does it wear off at some point even with treatment breaks?

Also, this might sound totally ignorant, what is the difference between NED and remission? I have read conflicting opinions on the web. Thank you again for all that you do, words can never express our gratitude. God bless.

Janine, wishing you the very best for your husband's upcoming scan.

Reply # - October 3, 2012, 12:49 PM

catdander
Posts:

There is a difference in NED and remission but I don't know if I understand it completely.

Let's see if I can start it off with this;

NED is used in lung cancer and stands for no evidence of disease and is used for the 2 or 5 years before someone is considered cured. A person with stage 4 who has achieved a complete response but doesn't normally last more than a year without treatment.
When someone is considered in remission (not used in lung cancer) they are often stable or have a complete response (no measurable cancer) that can be expected to last for at least years.

Anyone else?

Reply # - October 3, 2012, 07:53 PM

Dr West
Posts: 4735

I don't think there's a meaningful difference. Doctors happen to use the term remission as a complete response, most commonly with regard to "liquid tumors" of the blood like leukemia, lymphoma, etc., and NED as a complete response for a solid tumor. NED is also the term used after someone had surgery or radiation or chemo/radiation and there is no evidence of viable cancer. You don't generally refer to someone as being in remission after they had a surgery to remove the cancer. But some of this is just semantics.

A PET scan could potentially tell where the cancer is, but it isn't generally helpful in a situation in which the CT is very ambiguous. Again, if the CT suggests such a minimal amount of cancer that it's very dubious that more treatment is needed, that's not usually a situation in which a PET scan is very instructive. If it's so subtle that a CT barely shows progression, a PET scan isn't going to show a raging cancer not detected on the CT.

A slightly enlarged lymph node doesn't necessarily prove cancer, but in someone with a cancer that typically involves the lymph nodes, that's usually the reason unless that person has an infection or other good explanation for one or more lymph nodes to be enlarged.

Our treatments typically become less effective over time, but that's usually a gradual change. I would consider it very reasonable to return to a treatment that was previously used and effective, then just stopped to give a patient a break, but the patient's cancer didn't progress on that treatment. In fact, that's definitely the approach I most commonly use in advanced NSCLC after a person has been on a break from a treatment like maintenance therapy.

-Dr. West

Reply # - October 4, 2012, 06:20 AM

luke
Posts: 101

Dr. West

You mentioned that you would consider it reasonable to return to a treatment that was previously used and effective, then just stopped to give a patient a break. Would a platinum doublet be an exception to this?

Also, if you would not return to a platinum doublet which worked, do you consider it sensible to return to the non-platinum agent in the doublet? So for instance, if we had a good response from Carbo/Gem first line, and stopped after 6 cycles because conventional wisdom so dictates, and proceeded with Alimta switch maintenance, can we at least return to Gemzar?

Reply # - October 4, 2012, 11:18 AM

catdander
Posts:

Luke, I'm sure Dr. West will speak for himself when he returns online.

Until then I will say that it isn't usual that a doctor would return a patient to the platinum.

and It wasn't usual to return a patient to the other drug (gemzar in your case) but is becoming more of an option as maintanence and further lines of treatment become the norm. There isn't any or much research on this but it is being done more often and seems to be effective for responders.

Hope that's hopeful,
Janine

Reply # - October 4, 2012, 02:07 PM

bh
Posts: 66

Dear Dr. West, thank you, makes sense when you explain it. I truly appreciate your taking the time to answer all my questions :) You must be infinitely patient and must love what you do, we are so lucky to have you.
Janine, thank you for your response :) I am so glad I found this forum last year and recently recommended my friend to this site, her husband was diagnosed in August and she is falling apart more than he is. I told her just visiting this site and reading about other patients and caregivers is a solace in itself.

Reply # - October 4, 2012, 06:11 PM

Dr West
Posts: 4735

Luke,

It isn't typical, nor is it my inclination, to continue a platinum-based doublet. First, with doublets in general, there isn't evidence that doing a two drug combination leads to a better result than sequential single agent treatments. It becomes a balance of trying to give good anti-cancer treatment while also trying to preserve a patient's ability to continue on therapy -- essentially trying to not overdo it early because you're going for endurance. More and more, we're trying to think of treatment for advanced disease as less a sprint than a longer-distance race, if not a marathon, so you need to pace yourself.

A doublet might be considered in a previously treated patient who is especially fit (and motivated), but there's no evidence you get longer survival and you might just get more side effects. With carbo in particular, there's also a real risk of quite problematic hypersensitivity reaction that tends to occur with ongoing treatment, so that's a real issue we try to avoid.

-Dr. West

Reply # - November 8, 2012, 10:31 AM

bh
Posts: 66

Mom had her onc appointment and the doc said that the lymph node growth/swelling was not alarming, was negligible and to wait and watch. Mom's next CT scan and appointment is in January.

In the meanwhile, I got a hold of her old CT scan and realized that the growth was 11 mm in January, 12 mm in April and now it is 17 mm. To me that sounded pretty bad but when I called the onc, she still believes it is not worrisome as mom has no symptoms and the nodule in her lung is unchanged and does not recommend chemo. I am just worried that the cancer is in the lymph node and could spread elsewhere undetected if left untreated at this point. Not sure if there are any options to treat or not.

Reply # - November 8, 2012, 04:55 PM

Dr West
Posts: 4735

The issue of what is significant growth is really in the eye of the beholder. I agree that a change from 12 to 17 mm is at least arguably clinically meaningful, though it doesn't sound alarming if that's the only area of visible disease on the whole scan. As for whether to intervene, it's always a balance of the risk of treating vs. the risk of waiting, and that varies from one individual case to the next.

Good luck.

-Dr. West

Reply # - November 8, 2012, 05:05 PM

catdander
Posts:

let me edit that to say, Dr. West has spoken for himself...

Hi bh, It sounds like your mom continues to do well in terms of the growth rate of her cancer. Dr. West's last post here corresponds to what you have written your mom's doctor is saying. If she isn't having symptoms and the growth is slow she doesn't need treatment. You want to save treatment for as long as possible. Plus your mom has been through a lot with many additional health problems. I'm sure you could find a doctor who will treat her now but the question is how can you treat her so she can have the the longest life with the best quality.

It sounds as if her doctor is watching closely and with your close attention too you all will be able to catch anything concerning and treat at that time.

I hope that makes since.

It's good to hear from you and glad your mom gets more time off treatment.

Janine

Reply # - November 10, 2012, 11:07 AM

bh
Posts: 66

Dear Dr. West, thank you. I know what you say is so true, I also chanced upon Laya's response to an old question where she had said that radiation in Stage 4 cancer just to reduce lymph nodes is not very helpful unless to relieve symptoms as there are already micro mets in the blood and treating the lymph node is not going to prevent the spread of the disease. That is a scary thought to have to wait to see if, where and when the cancer will manifest again.

Janine, thank you too, you echo my husband's sentiments, he tells me mom is happy, comfortable and symptom less and we need to learn to enjoy that.

This Diwali season, I say a fervent prayer to keep you and your family healthy and happy always, Dr. West. We call it "punya", the carrying forward of doing good unto others, good karma sort of, and I hope your punya blesses and shields your family for generations. Also, a prayer for all the patients and doctors on this forum, and their caregivers! May the festival of lights dispel darkness!

Reply # - November 10, 2012, 11:22 AM

certain spring
Posts: 762

How lovely - thank you bh for your Diwali wishes, and the same to you.

Reply # - November 10, 2012, 04:09 PM

laya d.
Posts: 714

Beautiful bh. . .thank you. . .and the same to you as well. . .

Laya

Reply # - February 10, 2013, 07:05 PM

bh
Posts: 66

Wanted to update on mom's condition. She had her CT scan and follow up appointment in the second week of January, her cancer is stable, her nodule in the lung seems to have shrunk, no treatment since April of last year. Instead of a repeat scan in 3 months as has been the case since last year, doc asked her to take a six month break. She will go back to the onc in August barring no symptoms or aggravation. Keeping my fingers and toes crossed that she continues this way for a long, long time. Her speech is improving everyday, she walks with her walker even long distances and is doing well, spirits wise.

Dear Dr. West and all the other doctors on the forum, thank you again for all that you do, without you, there would be no hope.

Reply # - February 11, 2013, 01:30 AM

certain spring
Posts: 762

What great news, bh. Thanks for the update and best wishes to your mother.

Reply # - February 11, 2013, 08:30 PM

Dr West
Posts: 4735

That's terrific, and I think it makes good sense to extend the interval as patients continue to do well for longer. I hope to hear continued good news of how she's doing.

-Dr. West

Reply # - June 12, 2013, 11:08 PM

bh
Posts: 66

Wanted to do a quick update. Mom is still doing good, almost normal except for the stroke even that has improved, it is almost as if the dreaded C word has disappeared for a bit at least. Mom has her next onc appointment July 17th, scheduled her CT scan for this Friday as her little coughs every now and then is worrisome, it is something new in the past month and happens only at night before she falls asleep, a slight imperceptible cough followed by a clearing of her throat. Hoping that her CT results are clear again and that she remains stable.

Reply # - June 13, 2013, 08:32 PM

Dr West
Posts: 4735

Thanks so much for that encouraging update! Please keep us informed...hoping to hear that she continues to do very well.

-Dr. West

Reply # - June 14, 2013, 06:04 AM

bh
Posts: 66

Dear Dr. West, thank you so much for those wishes. I love your new profile picture. Hope all is well with the family. I am nervous about today's CT scan but praying it comes clean. Thank you again.

Reply # - June 14, 2013, 09:58 AM

catdander
Posts:

Keeping you and your mom in my thoughts. I look forward to hearing more encouraging news.

BTW, I've not found the place to comment on Dr. West's photo so thanks for the opportunity to highjack.

I too love the new pic Dr. West. You look great for a guy who works as much as you. You must love it.

Reply # - June 17, 2013, 11:29 PM

bh
Posts: 66

Thanks, Catdander :), Laya & Marisa. Postponed mom's CT to next Monday as she wanted to enjoy her grandson's graduation without worrying about her scan. Keeping my toes and fingers crossed, even my eyes.

Laya, how are you doing? And your dad? I have thought of you many a time these past few months.

Reply # - June 26, 2013, 05:48 PM

bh
Posts: 66

Back to update on the CT scan. Not such good news, onc called this morning to say there are 2 nodules in the lung and a 3 cm lymph node, onc wants to re-start chemo right away because she says the 3 cm lymph node is alarming (is that large?), will get more of a direction at mom's onc appointment on Friday.

Please keep her in your prayers, it will be Alimta again according to the phone conversation. :(

Reply # - June 26, 2013, 08:44 PM

laya d.
Posts: 714

So sorry to read about the progression. . .Hopefully, she will do really well on the Alimta.

As to the 3 cm lymph node, I recall being told that measuring lymph nodes on scans sometimes is tricky and that the measurements may not really reflect things as we lay people imagine them to be - - for example, the 3cm may be a long skinny lymph node (and not necessarily the diameter of something round and 3 centimeters all the way around). Anyway. . .

And, thank you so much for asking after us. We are doing relatively well. Trying to keep real busy - - which is not too hard with home and work and a couple of really busy gremlins.

My thoughts and well wishes remain with your Mom...and wish all of you lots and lots of strength.

xoxo,
Laya

Reply # - June 26, 2013, 09:09 PM

Dr West
Posts: 4735

I don't know that it would need to truly be alarming to see enough change to consider it clinically significant enough to recommend chemotherapy now. And some peope just alarm easily.

Good luck with the treatment. I hope you have good news to share soon.

-Dr. West

Reply # - June 27, 2013, 12:34 PM

bh
Posts: 66

Dear Dr. West, that made me laugh and needed that laugh after the anxiety of the past few days. Thank you so much for that and eveything else :) I will be back to report after tomorrow's appointment.

Dear Laya, glad to hear you are keeping busy and the little gremlins are keeping you occupied! Nothing like a busy mind to keep it from feeling sad. Thanks for the explanation on the 3 cm, that made so much more sense. Thanks too for the wishes, will need them. Hugs.

Reply # - June 28, 2013, 05:03 PM

bh
Posts: 66

Just returned from the doctor's office. 4 rounds of Alimta to be re-started. Doctor was not too alarmed, she said radiation could be an option for the hilar mass but that it would pose its own side effects. As mom has tolerated Alimta with reasonably few side-effects in the past, doc felt this was the best way to go. She talked about a new clinical study being offered for which mom would have been a candidate if she had done single agent chemo previously.

The scan results are as follows:

new right upper lobe airspace disease
new right lung pleural based nodule
Increase in size in right hilar mass compatible with lymphadenopathy. Possible lymphadenopathy at the aortic hiatus, this is not well seen.
Cardiomegaly.

How bad is this? Reading the findings seem more serious than how the doctor presented it. She even gave us the option to wait to re-start chemo albeit reluctantly. She was happy mom is totally asymptomatic. She said it is like fire the bullets when they are really necessary approach. We decided to re-start chemo. Thank you for reading this far, worried but hopeful :)

Reply # - June 28, 2013, 07:38 PM

catdander
Posts:

I hope the alimta is a huge success. And so glad your mom is feeling so well.
Best wishes,
Janine

Reply # - June 28, 2013, 11:05 PM

bh
Posts: 66

Janine, thank you for those encouraging words. Really not sure what all this means and how to interpret the scan results as it has the word "new", does that mean new because of the absence of old (as they disappeared) or in addition to the old? I couldn't ask the doctor even though she pointed to areas of concern on her screen as I got a print out of the results only on our way out. :(

Reply # - June 29, 2013, 02:41 AM

catdander
Posts:

New means not previously noted by the radiologist or on the material being use for historical reference. Unfortunately progressing cancer often returns with multiple new nodules. But since there is no standard of writing or terminology it's best to get the most accurate info about meaning from the treating team.

Reply # - June 29, 2013, 05:59 PM

Dr West
Posts: 4735

As Janine noted, new means it wasn't seen on her prior comparison scan. I agree it's best to speak with her doctor about these specific questions, even if that means at a later call or visit. We request that people not copy and paste long verbatim passages of their imaging or pathology reports with a request for us to do an interpretation for them. It's not feasible or appropriate for us to serve in that capacity, since we're trying to address broader questions, not to serve as consultants for individual patient care issues.

Good luck.

-Dr. West

Reply # - June 29, 2013, 07:10 PM

bh
Posts: 66

Dear Dr. West, totally understand, edited out the report, my main concern was the word "new". I will do as you suggest and thank you for explaining what the term generally means.

Previous PostNext Post