Need Help...Dear Dad's new diagnosis. - 1270167

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daddysgirl1229
Need Help...Dear Dad's new diagnosis. - 1270167

Hi everyone. I've been over on the Colon Club boards for 2 months learning all I could about Colon cancer, but last week, after a new diagnosis, I've abandoned that community and found this community. Boy, can I use some information and I'm hoping you all can help me. Here's the story:

Early April, my dear 77 yo Dad had emergency bowel resection (no colostomy) with 5 of 12 lymphs showing cancer indicators. After 10 days in the hospital, we were told of a spot on the lung. We knew about it, as regular check-ups had indicated no concern and most likely a result of pneumonia bout he'd had 15 years ago. But this time, a PET scan indicated it was "lit up". So chemo for the colon delayed, while we checked out this spot. A biopsy done, indicated cancer, and surgery would remove it. Once the surgery was performed, the surgeon noted the lung had 20-30 spots (I've since learned they were too small to be seen on previous scans). We were devastated...this was not good at all. Now, the path report indicated the two cancers are different and not mets of each other. So, we forget the colon for now, and we start new chemo cocktail for Stage 4 LC.

Here's what I know: Yesterday, he was given a cocktail of Carboplatin, Alimta and some Avastin tossed in for good measure (tho Avastin has been delayed until next round) I think I know all the side effects of these new drugs and I've prepared my folks for all that and armed them with all the solutions to combat those side effects. He will take 2 steroid pills day before and after infusion, Emend for nausea. He will be monitored for white cell count too, (Neulasta? shot today) He will be "off" two weeks, and then round 2 is scheduled July 7.

I'm curious about the drugs ability to fight all those spots? Will they shrink the "spots" into something manageable? Should I be asking about another drug? Like Tarceva? Seems everyone is on something different and I'm still learning...you all seem to be a wealth of info!

biggerten
Hi, I sure am sorry to hear

Hi, I sure am sorry to hear about your family's troubles, what a lot of bad news in such a short time.

There are folks on this board who will come along in a while, I'm sure. With my wife being treated with Alimta, I am familiar with the steroid pill routine around the days of treatment, he's probably also getting B12 injections every few treatments, right? The Avastin caused my wife to have elevated BP after a while, but it was easily handled, and she had minor nosebleeds, and occasionally some protein in her urine, that will all be monitored. The Avastin was probably delayed due to the recent surgery.

The growths may shrink (respond), or they may be stable, both are good results, even if stable intuitively seems worse. There are no guarantees, and I'm sure CT scans are scheduled to check on the response.

Being 77, and having other health issues, the doctors may not want to hit him too hard with treatments, not wanting the effects to be worse than the disease.

I sure hope things go well for your dad and your family, good luck!

JimC
Hello,

Hello,

Welcome to GRACE. I am sorry to hear of your Dad's new diagnosis, knowing how this has affected him and your family.

The chemo regimen your Dad is receiving is a standard, perhaps the gold standard, for lung cancer. It is possible for such chemo to complete eradicate the visible cancer. That result would be called a "complete response". More likely would be a "partial response", in which the visible cancer shrinks. Another possibility would be stability, in which the chemo keeps the cancer under control such that none of the visible spots grow. Typically, a patient will be re-scanned after 2 or 3 cycles of chemo to judge the efficacy of the current treatment.

It is true that there are a number of possible regimens, but except for targeted therapies such as Tarceva, there is no reliable way to predict which chemo choice will be effective. If a biopsy was performed and there is tissue available, that tissue tends to tested for targetable molecular abnormalities such as EGFR mutations or ALK rearrangements. If either of those is present, drugs such as Tarceva (for EGFR) or Xalkori (for ALK) have a very good probability of efficacy, and are usually used as first-line therapy when the mutation status is known. If that.status is not yet known and your Dad has begun chemo, absent any deterioration in his condition it makes sense to continue chemo, re-scan after 2-3 rounds and then judge whether a change is in order.

If you haven't already seen it, Dr. Weiss' very thorough "An Introduction to Lung Cancer" is a great place to start.

Good luck with treatment, and please let us know if you have further questions.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

daddysgirl1229
Thank you, thank you! I sure

Thank you, thank you! I sure appreciate the info. Here's some additional info I wasn't able to include: Yes Tom, she didn't want to start the Avastin since so soon after his surgery due to healing and what it does to the blood vessels and supply. So, that will be included in the next round on July 7.

I'd like to add that our oncologist has sent his "sectioned" lung piece to Foundation One for further analysis for targeted treatment. I feel she's very aggressive with her process for treatment. I do like her. I didn't like the lack of communication within the treatment center (and her offices) when she almost cancelled treatment this week when we had been in for consult with her PA the week before, ordered all the meds, and were ready to start. I'll have to be a bit firmer in my convictions on that field! I'm my parents voice when they can't seem to find theirs in our meetings.

I visited Daddy today, and he had a serious case of the hiccups. Seems my research uncovered the culprit of the steroids. He, and my Mom, didn't sleep much last night, and I hope they will subside this evening for him. So far, no side effects other than those annoying hiccups. The alternative is something worse, so Dad joked he would take these and work thru it! Such a positive outlook on a grim diagnosis. I'm so proud of him.

A news story tonight on our local news about Opvido and the success of those trials and how well it's worked for NSCLC. Do you know more details on this? Should I ask about that at sometime in the future? I know we need to work thru the first rounds and adjust, but looking to have my guns loaded if Carbo is not working well for him. I have SO much to learn and they look to me for additional info on what they "think" they heard at appts, which is exactly why I go, and exactly why I've come to you all! Thanks in advance, and thanks JimC for the link. I'm off to read....

daddysgirl1229
Another thought here too..

Another thought here too...Since this is my first time dealing with the big C, what does "first line" and "second line" treatments mean? I'm sorry to sound so uninformed, but working hard to be totally educated...I think I read Dr West said to educate yourself like your life depends on it? :)

biggerten
This round of chemo is first

This round of chemo is first line, the next regimen would be second line.

Since Avastin is being used, that must mean this is adenocarcinoma. Opdivo is not yet labeled by the FDA for adeno, but should be very soon. Keytruda is another in the same class of drug, and may be soon as well. They both could be prescribed now, since they are approved for other indications, but payment may be an issue, that's between your father, the oncologists, and the insurance or Medicare.

These new drugs (also called biologics) have been described as practice changing and sound like they will be the standard second line therapy, and soon work their way into first line combos, unless targeted therapies are available, EGFR, ALK, etc.

And of course, maybe your oncologist participates in clinical studies, offering access to unproven yet promising courses of treatment, often with improved monitoring necessitated by the study protocol. These are personal decisions, yet something to be aware of and consider.

Lucy's (my wife) oncologist suggests omeprazole with the steroid, it's available over the counter, such as Prilosec. The oncology practice may have a palliative care nurse to help with meds.

The pharmacist is a sometimes overlooked source of info. A handy thing for us is to call the pharmacy for refills, they handle the interface with the oncologist for prescriptions. A call to the oncologist can often involve being placed on hold to wait for the often busy nurse, who then has to talk to the often busy Dr, yadda yadda yadda. The pharmacy does that for us!

Opioid pain prescriptions are a little more involved, the law requires going pick up the prescription, bring it to the pharmacy and wait for it to be filled, these cannot be prescribed over the phone due to opioid abuse issues, it's known as hillbilly heroin.

Please note that I describe the situation as I know it here in the US, that's my only experience, if you're in another location, approvals and such are different.

daddysgirl1229
Once again, Thank you Tom! I

Once again, Thank you Tom! I'll remind my folks to talk with the pharmacist if necessary. I'm in Florida by the way. I'm still researching so I'm informed to ask those questions upon the next round...or before if need be.

Daddy still has the hiccups long with burping today. I called the ONC late today, who directed him to take a nausea pill. If that didn't work, a "second line" would be to juice a whole lemon, combine with a tablespoon of sugar and drink it! I haven't talked to my folks this evening, so don't know if any of this worked yet, but I will report back tomorrow. Such a simple remedy if it worked, and who wants another drug introduced if it's not necessary?! If it doesn't subside over the weekend, we'll call the ONC to see what we need to do next. He's not slept well in days now, and the Dr is concerned since he needs his rest... obviously.

Thanks again. Have a wonderful weekend, and Happy Father's Day to you all.

catdander
Hi Daddysgirl, Welcome to

Hi Daddysgirl, Welcome to Grace. Tom and Jim have been excellent resources. I often read their posts and think, Wow, I wish I'd said that!.

I wanted to add a folk remedy for the hiccups. It works every time for my husband and me. Drink a couple of sips of water from a cup, with your head upside down, so that the upper lip cradles the bottom of the cup instead of the bottom lip. Your dad may want you or your mom to help balance as he bend over. I don't remember if D had hiccups with his treatments so I can't say if it works for steroid or chemo induced causes.

It sounds as if you're getting a good hold of your dear daddy's cancer care. They are lucky to have you.

Happy Father's Day!
Janine

daddysgirl1229
Thank you catdander for the

Thank you catdander for the kind words. I'm trying, and you all are a great source of information and guidance. I thank you all.

Daddy made it to dinner tonight with us. Very tired from lack of sleep due to persistent hiccups from hell. After researching the net for help, I have to share a remedy that seems to work (at least for him and maybe it will help others): Pressure points! Apply firm, steady pressure to the inner point of the eyebrows near the bridge of the nose. press for 3 minutes. Hiccups went away! Repeat if and as necessary. Don't know if they stayed away for the evening. My folks were so tired, I didn't want to call them tonight. :)

Next topic: Daddy has a visit with the thoracic surgeon next week. I'm going with him. Mom is taking a break. I'd like to know what questions, other than the basic ones, to ask him. He's not the ONC, but Daddy had a chest x-ray last week so I assume we are meeting to discuss the status of the section removal (can't remember the medical term) He seems to have a very loose cough at times. Sputum to a cup reveals no blood or even a tinge of blood (per Mom)

Bloodwork with the Onc this week too. I will call both these Dr's and inform on the hiccups. Don't know if we need a drug, or Ativan to sleep...suggestions are welcomed, and thank you in advance. Sorry I'm so new to this diagnosis that I may be asking very elementary questions. Hope you all had a wonderful Father's Day...I know I did.

catdander
As for the elementary

As for the elementary questions don't worry we've all been there. You probably know this already but our search feature is very helpful for searching specific terms or groups of words. And we have drop down menus and tagged words all over. Here are results from a search of hiccups that may be helpful is your dad needs further assistance, http://cancergrace.org/search-results?q=hiccups

So glad to know he's found a hiccup solution.

It sounds like the appointment is a follow up on your dad's recovery. Any questions related to his recovery, wound recovery, pain and or pain management are appropriate. There aren't any lists that we offer since any one person is going to be different than the next.

Keep us posted.

Janine

daddysgirl1229
Hi everyone! I've been gone

Hi everyone! I've been gone for some time, grandson came to visit, working my job as a real estate agent, and keeping the DH's books for his business and of course, checking with Daddy and making sure he's ok! My plate is full! So, I'd like to catch you up with the latest on the line of treatments and thank you all for the private messages as well. I appreciate the support.

We've just finished the last round of the Carboplatin/Avastin. He's doing remarkably well and for that, I'm thankful. So yesterday was the last round and we know that he's had a kidney stone for a couple years now. Nothing to worry about, but ONC wants him back to the urologist to be sure. Blood noted in his urine yesterday and at an elevated level. I know the chemo can affect kidneys and I've not mentioned this to Mom or Daddy at this point. Dad wants to wait until the next CT scan in 2 weeks, and take those results to the urologist. The last CT scan (August) showed no increased size or spread of "spots". Seems to be contained and the ONC was quite pleased with the results. Next scan will tell us whether he will go on a maintenance schedule of only the Avastin, or if she wants to use the Alimta only. Either way, it's indicated she will drop the Carbo and he can have a more active lifestyle. His port wasn't working well yesterday so that was also a big issue. Clot busting meds given to clear the port. He was poked a lot to get it going again!

Aside from that, his CEA indicators were down. He's coping quite well, tho tired naturally. His eyes are a bit droopy, with pinkish rims, and I've read that's common too. His weight is back up to normal, which for him is still skinny! I worry about his kidneys now, and wonder about all these areas that were there, and no one said to worry. Right now we are treading water and hoping for the best. I'm hopefully optimistic, but I'm also a realist. I'll let you know what happens next, and as always, I look forward to your wisdom!