NSCLC - Stage IV

[Brandie721]

Hi -

My Mom was just diagnosed with NSCLC Stage IV with 6 brain mets and 1 met to a single rib. Her upper left lobe of her lung (i.e. where the tumor is) has collapsed. She is seeking treatment at Brigham Women's/Dana Farber here in Boston with me. I have to say so far I am not impressed. Everything moves so slowly and even though I understand there are people ahead of us, I know there are always appointments left for emergencies. I had to yell and scream to get her into see a rad oncologist before August 10. We still can't get her a medical oncologist appointment before that date. She has severe shortness of breath and no one is treating that. She is on Decadron for her brain swelling. I just do not understand why everything is moving at such a slow pace.

I also do not understand why she is only getting 10 days of WBR when I have read some people on here getting up to 20. She is (ironically) in relatively healthy condition. They also said she can't do chemo and radiation at the same time.

Am I missing something? I feel like I should be seeking another opinion. But I am supposed to be at "the best" (or so everyone says). Do we just have duds for doctors? Am I just too impatient?

Sorry for the long post, but I would really appreciate hearing from all of you as you have experience down this road.

thank you so much. Brandie (and Rosemarie, my Mom)

[Maryanne]

I am sorry about your mom's diagnosis. I have no answer to your questions as I am not familiar with that. But you will get responses from people who have.

Please be patient as many people are not on here during the weekend but you should hear next week.

Good luck, I pray things turn out for her.

Maryanne

[jdjenkins]

Brandie,

I'm so sorry you had to find this board, but I know you will find lots of support here. I encourage you to get another opinion. If you are having any doubts about the care your Mom is getting it is best to put them to rest now. Not sure why your Mom could not have radiation and chemo at same time. Dad had a brain met and had both at the same time. Maybe it has something to do with her collapsed lung. Keep being a such a strong advocate for your Mom's care.

Denise

[marym]

I'm sorry that you are having so much difficulty. I must admit, I had some similar problems, but I got on the phone and talked the doctor's nurse into helping with a better date. Once I got in, things moved quickly.

About WBR - ask why they are giving 10 days rather than a longer period. I was told that if I were ti have WBR they would give it over 4 or 5 weeks. There apparently have been studies done that when WBR is given to someone under 60 over the longer period, the incidence of problems down the road is greatly reduced.

I do also know that they do not want chemo during WBR and sometime even during regular radiation. Chemo can strengthen the radiation, so they avoid it during treatment.

I can say that since my initial treatment, my facility is excellent about scheduling things. You may at times have to wait around, but the schedules take place as soon as they should.

I can also tell you that the difference of a few weeks isn't going to matter, so don't think that. And I also want to warn you - if decadron has been used for a month or more, be careful wenning from it. It was the worst pain I had throughout my ordeal - and I had been on it about 6 weeks at 12 mg/daily.

Good luck.

Mary

[EastCoastLadi]

Brandie,

I'm sorry that your mom has to go thru all of this. I know a little about the Boston hospitals, my husband was in consult w/ Beth Israel which is affiliated w/ Dana Farber, but he is in treatment up here in Lowell, with a fantastic hospital and oncs. I would definitely get the second opinion. Also the "LMD's" - local medical drs. ( insider dr. thing!!) are (believe it or not)sometimes better equiped at handling this. But I would also call the onc. nurse to explain the situation, down in Boston, they deal w/ so many people, it's enormous, I've been there....it can make your head spin.

As far as WBR, first I think they don't do it w/ chemo ( in those instances) because it's too much for the patient, I know my husband had to stop chemo because of his WBR. Also I don't know why the 10 rounds, my husband had 4 weeks of WBR, so that's definitely a ? to ask. I don't know if her lung collapse has anything to do w/ it.

But Brandie, also know these hospitals in Boston are some of the best in the world. But they are also big on teaching and research and DF has alot of clinical trials going on, which is a GodSend for many people. BTW, where we are at, all the oncs. from here, pretty much know the oncs. down in Boston, they've worked with some of them at one time or the other, so if you worry about if you were to go outside of Boston, please know that. If you have any more questions, send me a PM (private message)

Grace

[kamataca]

I am so sorry you are dealing with these frustrations on top of everything else!

When my mom was dx, here in little ol' OKC at Mercy hospital on a weekend, they were a little slow on the ER side, but she saw a med. onc. within a day, and they had her set up and doing radiation within the week.

I don't know about your hospital, but the one thing I have learned is to ASK EVERY QUESTION you have! You could phrase it as, "I was talking to a friend (or something) who has LC, and he/she said..." I personally think most Drs write off anything that begins with, "I was reading on the Internet..."

Hey, we're all friends here, right?

Keep us posted on the proress.

Kelly

[icbn]

Brandie, I am so sorry you had the need to find us, but am glad you are here. I cannot speak to the dx plan but Definitely get a second opinion.

"kamataca"]." I personally think most Drs write off anything that begins with, "I was reading on the Internet..."

I find telling them that, "..I read this in a secret book I saw in an alien space craft when I was abducted last year...' is also a big turn off for doctors.

[Brandie721]

Hi everyone,

Thank you so much for your replies and so quickly! I really appreciate it. I have done all the logical things (harassing the oncology nurses, schedulers etc) and that got her intial radiation appt moved up. But now we have to wait until they make the mask on thurs (8/4) and then she still won't begin radiation until the following monday.

I guess part of my impatience is that her primary care doctor back home ignored this for somewhere between 1 and 2 years. My mom kept going and they kept sending her away with a diagnosis of bronchitis. My mom was brought up to not question authority (she is 65)...especially when it comes to doctors, priests etc. Now cancer has taken over and everything still is moving slow.

We are going to get a second opinion with Beth Israel on Monday (which shares research with dana farber, but is not clincally affiliated) and then Mass General if we are still not happy.

I just want to keep her spirits up. She is a tough cookie and I know if someone can beat this into remission it is her.

thank you, everyone again. Little things like this mean so much. Brandie

[Don Wood]

Brandie, welcome here. It is good to get a second opinion, and don't be shy about asking questions, such as why she can't have chemo along with radiation (my wife did and she was 65 at the time). Of course, each case is different, and that is why you should not be reluctant to ask questions. Medicine today is not what it was back in your mom's hayday, when things were a lot simpler. She needs to adjust with the time, and that is coming from a 72-year old (me). Keep us posted. Don

[dchurchi]

Brandie,

I am sorry you need us, but glad you found us. My

husband had brain mets and he had 10 WBR treatments and then 15 IMRT treatments.

Alan only had 1 large turmor so the combination of the two treatments were

very successful. No longer any sing of his tumor. We

deal with small issues as short term memory and hearing loss, but small price to pay for saving him.

Unlike your mom, however, Alan had his first radiation treatment with in 2 days of DX.

we saw his medical oncologist within 5 days and chemo

started within a week. We are very happy with his Drs. Get as many opinoins as you

feel necessary to get a medical team you are condifident in. I feel this is very important.

Many prayers will be said for you and your mom.

[I-Keep-Praying]

Brandie, not sure if this will help. But my mom, has 3 brain mets areas. She was started on WBR about 1 and 1/2 wks after discharge from hospital. She did 5 days a week for 3 weeks (15 tx's). Now she is to start chemo for the lung. I remember them saying something about not being able to radidate the brain and do lung chemo at the same time, but I cannot recall why. Best of luck, keep praying.

Jami

[karenl]

Hi Brandie

So sorry to hear about your Mom. The early days following diagnosis are so devastating.

It is a good idea to get a second opinion if you do not feel confident in what the doctors are telling you - even if only to have confirmation that they are on the right track.

When Mum was diagnosed, she also had a single met to a rib, and was otherwise in excellent health. About 18 months later, brain mets were discovered, and she had 10 sessions of WBR, and no chemo during that period. Mum handled the radiation well at the time, but was extremely fatigued for several weeks after, and I think that chemo and WBR together would have been way too much for her to take. Of course, everyone is different, but I would guess that if your Mom is severely SOB, then they may think the two therapies together would be too hard. I would like to see her SOB being dealt with a bit more promptly.

All the best with your search for answers. Everyone is different, and deserves an individualised approach to their illness and treatment. What is right for one person will not necessarily be right for your Mom, but do keep seeking explanations so that you are all comfortable with what is being done. Saves the heart-breaking "what-if's" that can plague you later on.

Karen

[Chanwit]

Hi Brandie,

I'll give some of your concerns a shot.

A lot of this is probably all too familiar to many of us here. I know everything was a blur and still is sometimes. You said your mom is healthy and in good spirits. That's a good start and do everything to keep it that way. I think you are in good hands with the cancer center you have started with but other cancer centers will trip over themselves to give you a 2nd opinion and usually in short term. I think every case is unique. In my wife's (Lisa) case she too had wasted a lot of precious time with our trusted primary care doctor. Useless back xrays, misdiagnosed chest xrays thought to be pneumonia. I'm of the opinion now that a younger doctor out of internship might be more concerned and proactive but that's in our past now. Because of the delays, Lisa finally said enough and we went to the ER where she was dx and admitted. Being admitted pushed things ahead and she was getting radiation simulation and the mask made within a week. She had a collapsed lung too but was getting O2 in the hospital. That's what you should watch should she start having worst SOB. My wife received about 10-13 WBR but was also getting chest and pelvis radiation at the same time and then they did 5 more treatments to the chest lung tumor. The results to the brain and sacrum worked pretty well and brain mets started shrinking and the bone mets were wiped out and she could finally sit down w/o pain.

Once things get going for your mom things will start to happen on time as long as she stays strong. The radiation pretty much wipes you out and chemo does too so they don't do it at the same time. Lisa had a 2 week wait after radiation before they would start chemo. I know you and your mom are eager to get started with treatment but the time period seems reasonable as long as the symptoms don't worsen. I will add that Lisa was given one dose of Taxol and Carboplatin chemo therapy just before the radiation. The doc said that the Taxol would increase the effect of the radiation because she was way behind the power curve. I think this is the only chemo that can be used so close to radiation. That's what I picked up from Onc. So you are on your way. Keep posting and you will get lots of support not to mention millions of dollars of first hand information.

Love Chuck and Lisa

[Ry]

Brandie,

Sorry to hear about what you are going through. For us, treatment went incredibly fast for 1 reason --our PCP pushed it - he personally called and had everyone make time for us.

There are members here that are in your area that will hopefully see your post and respond about where they are treated. Good luck to you and keep advocating for your mom.

Rochelle

[Frank Lamb]

Brandi,welcome to our support family.There are many knowing and caring people here to answer questions and help you.

Second opinions are usually a good idea.It seems to me that the health care system all across America is somewhat backed up and slow.

It is also ok to ask and demand answers from drs.If a dr.doesn't want to listen or answer then find another who will.

[MsC1210]

Hello Brandie and welcome

I am sorry you had reason to find this site, but I am glad you did. As you can see there are a lot of great people here to help you out along the way. You have gotten a lot of great advice already here and I cannot add much to that. 2nd and even 3rd or more opinions are so important and I am glad to see you are pursuing that.

One thing I will add here. If you have not already done so, pick up a small notebook or organizer to keep notes in regarding the appts and treatments etc that your mom will be going to. Also jot down any questions the 2 of you may have as once you get to the actual appt it is so easy to forget!

Ask for copies of the test results for your and moms records. That way you have easy access to them should you decide on another opinion..

Sending prayers and positive thoughts to you and your mom,

Chris

[trish2418]

Hi Brandie and welcome to the board. I have nothing to add re treatment options -- I just wanted to let you know that you and your mom are in my prayers.

Trish

[kreed70]

I am so sorry for all of this. Welcome to the site. It has been Godsend!

Go for a second opinion!! I believe that my mom is still here because we did!!

Kelly

[Brandie721]

Hi everyone,

Thanks again for all the responses and wishes and prayers! I did manage to get her appointments for 2 second opinions - one at Beth Israel on this Thurs and one next week (which may be after the WBR has already started) at Mass General.

I am so glad I found this board. My Dad has dementia so he really can't offer any support and my brother isn't involved at all (by his choice), so I am grateful to have people to talk to who are there and who have been there.

thanks again. Have a good afternoon everybody! Brandie

[Carleen]

Welcome Brandi,

I wanted to say I am so sorry you and your mother are going through this. Welcome, and I hope that we can help you through this terrifying journey.

First of all, I strongly recommend getting second opinions. I feel that one of the reasons my husband beat the statistics is that we didn't just sit on our hands. We got second, third and up to fifth opinions. All the doctors agreed to communicate throughout his treatments, and would confer about his progress and what should be tried next. 5 minds are better than 1. Assemble a kick butt team of doctors for your mom. If nothing changes, at least your minds will be at ease that it isn't just one person's opinion, that many brilliant people agree it is best for her.

I also have some experience with the radiation question. My husband had radiation to his brain as well as radiation to several other body areas. With the WBR, we were given 2 options. We could do 10 treatments at a higher level of radiation, or 15 treatments at a lower radiation dose. Both options totalled the same overall radiation exposure. The 15 day option is easier to tolerate, however studies show that tumor cells do respond slightly better to higher doses over shorter periods. At the time, my husband had just finished chemo, and was really worn out. He chose the 15 treatment cycle. It held his brain mets stable for over a year, and were not growing even as he passed away.

Keith did receive chemo at the same time but only when receiving radiation to the body. We were told it wasn't a good idea at the same time as brain radiation. Normally chemo does not breach the blood brain barrier. However, after WBR, some about of chemo will travel to the brain. The effects of WBR are very difficult and can cause brain swelling which in turn causes many other symptoms. If the brain is swelling, and chemo is added simultaneously, it can increase the instance of internal bleeding. (This is the information I gathered from out doctors).

Hope this helps some. I will keep you and your mom in my prayers, and hope she tolerates treatment well and it KILLS KILLS KILLS those cancer cells.

Carleen