Preparing for appointment- advice and knowledge appreciated - 1269183

knic
Posts:35

Hi

A brief history of my dad 55 years old nsclc diagnosis

Dad dx stage 3b feb 2012 squamous nsclc
Intense radio/chemo
Sep 2012 Tumour shrinkage 80%
April 2013 Tumour growing
October 2013 chemo
Next scan tumour stable
Jan 2014 dx collapsed lung and fluid
June 2014 dx angina
Feb 2015 dx 2 mets to brain now stage 4
March 2015 20gy wbr for 5 days

Dad finished wbr on the 22nd March, he has many the same symptoms as he did before he started- nausea, loss off appetite, extreme fatigue and just generally not feeling well.

One of the things that has got worse in the last few months is his cough, he has major coughing fits and coughs a lot. He has fluid that has never been drained or treated. His last chemo was in October 2013.

He takes meds for his angina- statins, aspirin and beta blockers. As well as 4mg steroids and anti sickeness for brain mets.

Dad is seeing onc on Thursday, he hasn't had a scan yet to see if wbr has done anything. I just want my dad to get the most from his appointment- ask the right questions etc
Dad has limited knowledge on drugs and chemo etc should he be asking about a certain treatment? Why would it be my dad has had no treatment for the fluid and what could be done?
Dads primary tumour has progressed slightly tho last few scans regarded as stable despite growth- considering all my dads other health concerns what would be a good next step.

I understand the importance of being an advocate for your own health and I just want my dad to have the best chance and knowledge to do this as I am sure more could have or can be done.

Thankyou

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Reply # - April 13, 2015, 05:17 AM

biggerten
Posts: 83

Perhaps someone more knowledgeable will chime in, but Opdivo, one of the new PD-1 immunotherapy wonder drugs was just approved for squamous nsclc by the FDA. I'd sure want it discussed.

Reply # - April 13, 2015, 06:06 AM

knic
Posts: 35

Hi Tom

Thank you for your reply, I should also mention I am in the UK so behind on some treatments you have in the US

Reply # - April 13, 2015, 11:25 AM

catdander
Posts:

Hi knic, Welcome to Grace. I'm very sorry your dad is going through this. I looked around but didn’t find anything that suggested approval of Opdivo (Nivolumab) in the NHS. http://www.macmillan.org.uk/information-and-support/lung-cancer/underst… is a good source period but even more so for those in the UK.
Progression is often considered as a measurement of more than a few mm because just a few mm more or less can be the result of CT resolution or where the section cut of the image is taken. Studies show that even the same radiologist reading the same image can come up with different readings at different times. So something in the realm of less than a cm may be considered stable especially a year or so out. On the other hand if the tumor is pressing on a an airway or some other spot even very small progression can be a detriment.

A question I’ve got is has your dad’s PE been treated? If he has fluid in the pleural or pericardial (called an effusion) he could be experiencing these symptoms from the effusion. There may be options to drain the fluid if it’s thought to be causing symptoms. More on that here, http://cancergrace.org/lung/2007/03/18/mpe-managment-options/

The best way to treat a cough is to treat the cause but that is often a difficult process. Here is a post on cough, http://cancergrace.org/cancer-treatments/2009/05/09/managing-cough/

If it’s thought that the cancer is progressing and causing the symptoms then chemo or a clinical trial may be an option but his team would need to determine if he’s well enough for anticancer treatment to be beneficial. There are several options docatoxal and paclataxal, tarceva, gemzar, navelbine and others are given as single agents. If he’s not convinced his doctor is giving him the best options then a 2nd opinion may be in order.

I hope the appointment goes well and let us know if you have followup questions.

Janine

Reply # - April 13, 2015, 11:40 AM

catdander
Posts:

I just wanted to add that wbr can cause most of the symptoms your dad is having (cough isn't usually caused by wbr). They can last for a month or even longer. Pushing yourself too far physically doesn't seem to be beneficial in limiting or slowing these symptoms.

Reply # - April 13, 2015, 12:46 PM

knic
Posts: 35

Hi

Thank you for your response it is very helpful. Dads pe has never been treated, they said it wouldn't benificial as would keep coming back and also some pockets of fluid can't be drained. I do find this hard to believe that nothing would help specially if causing my dads cough.

The other problem my dad has is trouble swallowing certain foods- bread in particular he said it feels like it doesn't go down properly? Could this be the tumour pushing on the oesphagus or something else?

I will have a look at the links you put and once again thank you so much for your reply.

Reply # - April 13, 2015, 04:33 PM

JimC
Posts: 2753

Hi knic,

It's difficult for anyone who is not familiar with your dad's situation (no access to scans or physical exams) to be able to say whether his pleural effusion could be treated successfully. If a majority of the fluid is loculated (trapped in pockets), neither draining the effusion or performing a pleurodesis would likely be effective.

Swallowing difficulties can have various causes, including a tumor pressing on the esophagus or even brain mets. Certainly it will be worth discussing with his doctor, who may order a swallowing test to see if the cause of the problem can be identified.

JimC
Forum moderator

Reply # - April 16, 2015, 08:34 AM

knic
Posts: 35

Hi

Sorry for posting again, but thank you for reading.

Dad had his appointment today, oncologist won't do brain scan till 3 months out of radiation so will have to wait for that.

Dads bloods are are fine nothing wrong with them so thats good. Dad said the onc reiterated several times as to the seriousness of the situation.

Dad is going to start docetaxel as a third line treatment. Onc seems to think do it while dad is well enough(tho to look at dad you wouldn't think he was plus the angina, collapsed lung) he will have 4 sessions over 12 weeks- once every 3 weeks. Is this normal plan for this treatment?

Has anyone had good results on this chemo? Is it a good plan of action?

Reply # - April 16, 2015, 08:43 AM

JimC
Posts: 2753

Hi knic,

In the U.S., docetaxel (Taxotere) is one of the drugs fully tested and found effective for second and later line treatment for lung cancer and is approved by the FDA in that context. It is certainly an appropriate choice for patients who are fit enough for chemo, and the dosing schedule is typical.

I hope it is effective for your Dad and that he experiences minimal side effects from it.

JimC
Forum moderator

Reply # - April 16, 2015, 11:05 AM

biggerten
Posts: 83

Hi knic,

Ran across this today, it may have interest for you.

http://www.biospace.com/News/european-regulators-postpone-bristol-myers…

Begin excerpt...........

"European regulators have decided to wait to recommend approval Bristol-Myers Squibb Company (BMY)’s possible blockbuster cancer drug Opdivo, saying that although its consideration was on its agenda, it will postpone the decision until April or even later.

A spokeswoman for the European Medicines Agency said on Friday that the nivolumab application will come up for consideration during a later meeting, as the committee takes more time to gather more information about the drug."

.........end excerpt.

Here's another, with a bit more information-

http://www.reuters.com/article/2015/03/27/bristol-myers-europe-idUSL6N0…

Good luck,

Tom

Reply # - April 16, 2015, 11:51 AM

knic
Posts: 35

Thank you Jim that is good to hear, tho I am worried that dads constant ill feeling after eating is going to be depramental in making him well enough for chemo. Do you know if wbr can make you intolerant to certain foods or if there is a diet that limits nausea?

Thank you Tom that is a interesting read, wish they would hurry and get it approved

Reply # - April 17, 2015, 10:40 AM

catdander
Posts:

Hi knic,

I'm sorry your dad is having these problems.

Eating small amounts at a time can be helpful, I learned not to put full servings on the plate because just the look of that much food or maybe the expectation of having to eat it all can trigger a distaste.
Meal replacement drinks like ensure (or homemade protein high calorie shakes) are a big help for many. My husband practically lived off them for a while.
Bland foods such as broths are both easy to get down, soothing and nutritious (low sodium or homemade).
The brat diet can be helpful as well, bananas, rice, applesauce and toast. My husband didn't have wbr so I know this is different but everyone is different, he got a huge sweet tooth and ate pastries lots of them. Too my husband and many others who describe poor appetite report having very different tastes than usual so trial and error may be needed to find something he can eat.

I hope he feels better,
Janine

Reply # - April 17, 2015, 10:49 AM

knic
Posts: 35

Thank you Janine that is very helpful. Feeling so down after dads onc appointment yesterday, he pretty much said to dad that if docetaxel dont work then that would be all treatment options exhausted? Would that mean dad would not be well enough for anything else? Dad has never had immunotherapy or biological therapies.

Dad has lost over a stone in the last few months and the onc was surprised that my dads blood were ok, he thought protein would be low but noted that the excess fluid in the lungs could be producing protein which would be useful? Does that sound right?

I am sorry for the bombardment of questions I guess I am just clutching at straws and hoping for a miracle.

Wish they would make nivolmab available here as seems to have good results.

Reply # - April 17, 2015, 03:01 PM

catdander
Posts:

It could be that your dad hasn't responded well to chemo in the past, there is a saying that responders respond. That means that if one chemo works then another (for that type of cancer) might is likely to as well (though to a lesser degree as lines go on. Unfortunately that works both ways, meaning if someone doesn't respond well to a therapy they aren't like to respond well to another chem.

Tarceva is often beneficial for those with nsclc who are egfr wildtype. As noted before another opinion about getting an immunotherapy may also be in order. Note that these therapies are very new and only work on a minority of people and we don't yet understand who or why that is as well they aren't without possible significant side effects.

Only those who have all the info can say whether further treatment may be more harmful than good. A conversation with his onc on the reasoning behind suggesting no more treatment will give you the answer but we wouldn't want to guess.

Janine

Reply # - April 23, 2015, 12:34 PM

knic
Posts: 35

I am getting more and more concerned about my dads nausea and feeling of need to be sick, he had it before wbr and still has it now is that an indicator that wbr has not been successful? He is on 4mg demaxathasone a day.

A scan is not due for a couple of months and onc was as useful as a chocolate teapot so really hoping someone can help.

Reply # - April 23, 2015, 03:12 PM

catdander
Posts:

Nausea is a big problem with chemo because the cells it kills are also the type found in the stomach. The good news is there are several options and combinations of drugs that can mitigate much if not all of the nausea and vomiting people experience. These drugs are taken in pretty different ways, one is taken on a regular schedule during and the days following chemo infusions. The other is taken as needed, when you feel nauseous.

If it's difficult to get good palliative care from the oncologist then nurses are great and really my go to people for the best care tips, (docs ya'll are great). A nurse your dad or you know from the onc office maybe able to help facilitate better communication with the oncologist. But in all fairness your dad should expect the doctor to be more helpful than you described. A 2nd opinion is never a bad idea and may help get your dad be comfortable. Quality of life is as important as quantity.

The following posts should be helpful.
http://cancergrace.org/cancer-treatments/2012/08/03/dr-stephanie-harman…

http://cancergrace.org/cancer-treatments/2012/04/04/harmanwebinar/

http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

All best,
Janine

Reply # - April 23, 2015, 10:50 PM

knic
Posts: 35

Hi Janine thank you again for such a detailed reply.

I guess my worries further as dad hasn't started chemo yet this is all I believe still related to brain mets, he had nausea before wbr and still having it now more then a month later. He is on anti sickness medication but I worry that the fact there's been no change with the nausea since wbr means the mets are still as big as before or even more have come.

I guess what would be helpful is to know

If nausea is a symptom after WBR and if so would it carry on this long after? I have tried to research and cannot seem to link wbr to nausea over a month after treatment.

If he feels sick now the chemo is going to make him feel worse :(

Reply # - April 24, 2015, 05:54 AM

biggerten
Posts: 83

knic-

There's news today about Opdivo (nivolumab) approval by the EU's CHMP for melanoma. Here in the US, squamous approval came about 5 months later than the melanoma indication, if that means anything I don't know.

There's mention about an early access scheme in the UK, perhaps you can find out something about that?

Anyway, here's a link - http://www.reuters.com/article/2015/04/24/us-health-cancer-bristol-myer…

Reply # - April 24, 2015, 06:59 AM

JimC
Posts: 2753

knic,

If your dad was experiencing nausea before WBR, I wouldn't think that it's a side effect of the radiation. Radiotherapy does not immediately kill cancer cells, it's more a process of disrupting their life cycles so that they eventually are killed/don't multiply, so it can take a while for the effects to fully manifest themselves. That's why doctors usually wait several weeks before conducting a follow-up scan, because the lesions will still be visible right after WBR and it won't be clear whether it has been effective.

JimC
Forum moderator

Reply # - April 24, 2015, 01:50 PM

knic
Posts: 35

Thank you for your replies.

What your saying makes sense, I guess this far out from WBR some improvement should be expected and it's a big worry that nothing is going in the right direction.

Reply # - July 21, 2015, 04:08 PM

catdander
Posts:

YAY!

Thanks Tom! Hope you and your’s are good.

Janine

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