My wife NSCLC w/brain mets

Jasper County Native

My wife is 41 years old, we have a 20 year old and a 5 and 6 year old.  My wife had just started teaching again back in August 2012 since our youngest ones were in K4 and k5.  She  had just passed her Praxis in Chemistry and Biology and was working on SPED certification and a MS degree.

A few weeks into her new job she started having symptoms which included her world spinning uncontollably for hours at a time.  These became more severe and made her unable to even sleep lying down.  After many ER visits, two ENTs diagnosed her with positional vertigo and gave her head exercises to perform.  After these had no effect, other than making her symptoms worse, the last one finally ordered a head MRI just to rule out tumors. 

Well surprise, surprise, the MRI found 2 "lesions", that's the word they used before they  mentioned the "C" word.  The bad one was about 21x18mm in her cerebellum near her brain stem, pressing on the ponds and partially blocking her 4th ventricle.  This was the one that had her living in hell.  The other was in her cerebrum and measured about 5mm.  The ENT said he had lots of experience with these types of tumors and that he was sure it was metastasized from somewhere else in her body.

He immediately ordered a CT of her chest/abdomen and found a couple of small nodules in her lungs and some enlarged lymph nodes in her chest.  We then went on a hunt for some easily accessible tissue to biopsy.  She had a mammogram and two suspicious lumps were biopsied and found to be nothing.  An unusual mole on her back was also tested with no cancer present.  The next biopsy was to be a lymph node under her right arm, but the surgeon was afraid to anesthetize her because of the large tumor in her brain.  She suggested a neuro consult.  All this took place over about a month.

The surgeon sent her MRI report to the neurosurgeon on that Friday and we had an appointment on the next Monday.  He said you should have been here a month ago, and scheduled surgery to remove the large tumor two days later on Wednesday.  The surgery went great and he got all of the tumor.  After pathology from the tumor, it was determined it was adinocarcinoma, NSCLC.  She spent 2 1/2 days in CCU and a week total in the hospital.  A week or two later she was readmitted because she was leaking CSF from her incision.   That was another week in the hospital.

We met with an oncologist in the hospital.  He and her surgeon recommended whole-brain radiation followed by chemotherapy.  Having read bad things about whole-brain, we did some research and she opted for a Gamma Knife treatment.  Seven hours on a Friday morning and she was done with radiation. They treated her remaining small tumor, grown to about 8mm by now, and the site where the surgeon had removed the larger one.

She got VAD port and took 6 chemo treaments (carbo/taxol) thru it until it became infected and she ended up in the hospital for 5 days with staph in her blood.  They removed the port and she opted not to get another one.

Being about 3 months since Gamma Knife, they ran another set of scans, MRI of the head and CT of the chest/abdomen.  The MRI showed the small tumor was shrunk to about 1/3 of it's original size, there was only scar tissue around the other site, and no new tumors!!!  The CT showed her lymph nodes and nodules in her chest were all shrinking.

She just re-started chemo with 4 or 5 more treatments to go, hopefully her veins will hold out.  She says sticking her vein hurts much less than when they used her VAD.

We requested molecular testing before Jan 1, because we had gone catostrophic on our insurance for 2012.  Just got the results back today, but haven't had the doc spell it out yet.  Doesn't make much sense to me, but I will post the interpretation sections here just in case they mean anything to anyone.

Lung Cancer, ALK (2p23), FISH, Ts

- No rearrangement of the ALK gene region was observed; however, 100% of nuclei had 3-6 intact copies of the ALK FISH probe.  The clinical significance of multiple intact copies of the ALK gene region in lung carcinoma is unknown.

EGFR Gene Mutation Analysis, Tumor

- Wild type

- Basically said there was no sign of EGFR mutation and so no related therapies would be helpful

dennycee

Welcome to the CSN website

You two have been through so much.   Your wife is a real scrappy fighter!  I know only a little about the EGFR and nothing about ALK. The wild type means the gene is found just as it is in nature or no mutation.  But you already knew that.  I recommend that you take the questions to the cancergrace.org website.  It is monitored by oncologists and they may be able to help you quicker --unless X Rock and Roller checks in tonight.  My best to you and your wife. 

Ex_Rock_n_Roller

Welcome to the unfortunate club

Although I am on Xalkori, I don't know much more about the testing than you can find on the net, but what they're looking for is rearrangements of the ALK region. Your wife unfortunately appears to be negative for that. Whether the statement about the unknown factor of the existence of intact copies of the probe turns out to mean anything (e.g. would they try your wife on Xalkori?), I have no idea. That's a question for the pros.

Best of luck!

Jasper County Native

One tough cookie

Thanks guys, she really is one tough cookie and she has been thru a lot.

Steroids were her salvation during her living hell of "vertigo" and migranes, but after 3 months on them, she is now a diabetic, having to take injections of novalog on a sliding scale and lantis every night.  She keeps forming blood clots; started with 3 in her right arm, so the docs put her on blood thinners including lovanox injections in her belly twice a day for a week or two.  The last CT scan showed they had disappeared, but found 3 more; one in each lung and one in her femoral artery, so it was back to the lovenox again

She is on high powered anti-nausea medicines, one being an anti-psychotic called Compazine, so chemo hasn't made her puke her guts up as we were expecting, but it still leaves her feeling crummy a couple of days later and her legs and feet swell as if they will burst.  The infection from the VAD was bad, but the 4 weeks without chemo was wonderful

She had lost some fine motor skill function on her left side after brain surgery and still hasn't fully regained that yet, hopefully therapy will help, but her neurosurgeon says it may be permanant since they had to damage/remove some healthy brain tissue to get to the tumor.

We can be a pain in the rear to her doctors sometimes, because we ask lots and lots of questions.  We didn't click at all with the radiation oncologist they initially assigned to her in the hospital because after our questions started, he said we shouldn't read so much.  Goodbye doctor Reed   She is an awesome self-advocate and I try to take up the slack when she is feeling too crummy to fight the docs   We try to take nothing for granted and never let docs make decisions for her without thorough discussion.

She says that no matter the outcome, she will not take anymore chemo after this round of 12-14 is over, but I think she will reconsider if they give her a good long break.  She is so tired of doctors and feeling bad and being stuck 1000 times.

We have had so many miracles so far; she could have just switched off before she ever had brain surgery; she could have easily died from staph in her blood; there are too many miracles to name, but suffice to say, We know that we serve an awesome God!  There have been so many people praying for her since this started, so many people that we didn't even know.

Thank you God for my wonderful wife!

Jasper County Native

12/12 chemo

Thursday is my wife's 12/12 chemo treament.  They will scan here again in about a week or so.  Hopefully everything is still shrinking!  Don't really know what to expect after this, but we are hoping that at most she will go on maintenance chemo.  We need all yor prayers. 

mind boggling

Jasper County Native said:

12/12 chemo

Thursday is my wife's 12/12 chemo treament.  They will scan here again in about a week or so.  Hopefully everything is still shrinking!  Don't really know what to expect after this, but we are hoping that at most she will go on maintenance chemo.  We need all yor prayers. 

Prayers for your wife and

Prayers for your wife and yourself. It is tough and there will be more than a few moments of "I don't want anymore chemo"........hopefully with prayers and her break in treatment will help her get through this.

Jasper County Native

Brain Surgery; Piece of skull discarded

When the neurosurgeon removed my wife's largest brain tumor, he had to remove a piece of her skull.  We expected this, but we didn't expect that he would not put it back.  He said it was because of pressure and the fact that he might have to go back in one day.  He also said that she would not miss it.

Is this normal procedure?  He didn't discuss this with us before surgery and we had no reason to ask. 

Has anyone heard of this or had it done?  Are there any risks?  Complications? 

CraiginPA

adenocarcinoma mutations

Jasper County Native,

It sounds like there might be ALK "copy number gain" (I think this is also called amplification), but that might not be what is driving the cancer.  Normally I wouldn't guess it'd be useful because too many copies of regular ALK would still turn off or on as needed instead of being locked "on" all the time like an ALK fusion mutation might be.  But at 100% of cancer cells with copy number gain sounds unusual.  You or your oncologist might consider asking top ALK expert Dr. Shaw (MGH, Boston) if there's anything useful in that or if suggests what the real driving mutation might be.

If the ALK amp (amplification) is not the issue, we'd still have the question of what is the driving mutation and is it a useful one.  Does she have a history of smoking?  The not-so-useful-yet KRAS mutation is common in smokers.

Never-smokers who don't have KRAS, EGFR, or ALK have a fair chance of having a very rare ROS1 mutation.  Dr. Shaw found my ROS1 mutation back when almost nobody new about ROS1's usefulness, and I've been successfully treated in her clinical trial for that for more than 1-1/3 years so far.  (I'm grateful that the MGH cancer center, a Harvard-affliated one, had the foresight to start testing for a wide range of mutations early and use that as a base for their research.)  Dr. Shaw also is doing promising research on an another very rare one called RET that I hope we'll hear more about soon.

There's some other rare ones in other experimental trials, too -- HER2, MET, BRAF.  Even the difficult to target KRAS has had experimental trials, with only modest success but they are making progress on figuring out how to crack that nut.  Of course there's others that re unknown or unidentifiable or not useful even for trials yet, but if it's a useful one it might be worth knowing.  Most local community oncologists assume patients would not be willing to travel to experimental clinical trials and so only test for things they can treat or which have trials nearby, but that might change if you ask.  It sure made a big difference for me, but I'm a younger-than-average never-smoker with no known risk factors.

Keep in mind that this driving mutation talk isn't about a cure.  If there's a useful mutation it might be inhibited for a number of months with pills with usually managable side effects (and almost none in  my case, so I seem pretty much normal), and maybe for months longer with a 2nd generation drug.  And you'd still have all the other treatment options available to try that aren't specific to a particular driving mutation.

Best hopes,

Craig in PA

 

Jasper County Native

mind boggling said:

Prayers for your wife and

Prayers for your wife and yourself. It is tough and there will be more than a few moments of "I don't want anymore chemo"........hopefully with prayers and her break in treatment will help her get through this.

thanks

Thanks MB

Jasper County Native

CraiginPA said:

adenocarcinoma mutations

Jasper County Native,

It sounds like there might be ALK "copy number gain" (I think this is also called amplification), but that might not be what is driving the cancer.  Normally I wouldn't guess it'd be useful because too many copies of regular ALK would still turn off or on as needed instead of being locked "on" all the time like an ALK fusion mutation might be.  But at 100% of cancer cells with copy number gain sounds unusual.  You or your oncologist might consider asking top ALK expert Dr. Shaw (MGH, Boston) if there's anything useful in that or if suggests what the real driving mutation might be.

If the ALK amp (amplification) is not the issue, we'd still have the question of what is the driving mutation and is it a useful one.  Does she have a history of smoking?  The not-so-useful-yet KRAS mutation is common in smokers.

Never-smokers who don't have KRAS, EGFR, or ALK have a fair chance of having a very rare ROS1 mutation.  Dr. Shaw found my ROS1 mutation back when almost nobody new about ROS1's usefulness, and I've been successfully treated in her clinical trial for that for more than 1-1/3 years so far.  (I'm grateful that the MGH cancer center, a Harvard-affliated one, had the foresight to start testing for a wide range of mutations early and use that as a base for their research.)  Dr. Shaw also is doing promising research on an another very rare one called RET that I hope we'll hear more about soon.

There's some other rare ones in other experimental trials, too -- HER2, MET, BRAF.  Even the difficult to target KRAS has had experimental trials, with only modest success but they are making progress on figuring out how to crack that nut.  Of course there's others that re unknown or unidentifiable or not useful even for trials yet, but if it's a useful one it might be worth knowing.  Most local community oncologists assume patients would not be willing to travel to experimental clinical trials and so only test for things they can treat or which have trials nearby, but that might change if you ask.  It sure made a big difference for me, but I'm a younger-than-average never-smoker with no known risk factors.

Keep in mind that this driving mutation talk isn't about a cure.  If there's a useful mutation it might be inhibited for a number of months with pills with usually managable side effects (and almost none in  my case, so I seem pretty much normal), and maybe for months longer with a 2nd generation drug.  And you'd still have all the other treatment options available to try that aren't specific to a particular driving mutation.

Best hopes,

Craig in PA

 

Thanks

Thanks for the info Craig, 

Hopefully the Taxol/Carbo are doing their jobs and we won't have to worry about backup plans.

jalu

Jasper County Native said:

Thanks

Thanks for the info Craig, 

Hopefully the Taxol/Carbo are doing their jobs and we won't have to worry about backup plans.

I HOPE YOU ARE HANGING IN THERE...

...You have been through a lot.  I've learned so much from reading your post -- but it is complicated.  I'm hoping the chemo is working and I will pray that your wife gets through it and begins the long recuperation to getting BETTER -- not WORSE.  I'm sure you have good days and bad days.

I'm dealing with my 86 year old Mother who has non-small cell adenocarcinoma of the lung that has metastasized to the brain.  The February 27th MRI showed 14 metastasis -- growing and multiplying.  She is now through 10 of 13 Whole Brain Radiation Treatments (WBRT).  This is the treatment of last resort -- not a cure.  The tumors WILL start growing/multiplying again and at that time -- my understanding is -- they can't do WBRT again -- they really cannot do anything -- brain cancer is terminal.  And it hurts.  Like your wife, my Mother is a fighter.  She is fighting to "maintain", but the treatments/steriods are taking her down. I can only hope that going forward, there WILL be some GOOD days ahead, but I'm afraid the BAD days will outnumber and far surpass the few GOOD days we have left.

My Mother has lived a happy, healthy, and good life of 86 years.  And because of her age, and stature (88 pounds, but healthy), I feel the doctors have totally given up.  There has been no chemo involved in my Mother's fight.  

But your wife is too young to give up and I wish you both an abundance of strength and courage in your fight.  Thank you for your posts -- I now realize there are (too many) others involved in fighting this dreadful disease -- going through what I am going through -- and it helps.  

 

nanaof7

don't give up hope

in 2009 I was dx with NSC adenocarcanoma stage 2 had some radiation and chemo then stop ped and opted for sugery in 2010 I was dx with mets (3) my brain was swelling and I was getting headaches like when you drink something cold too fast I was given  WBR and give 3-6 months to live my onc said if I did well with the radiation she would try me on tarceva my dx was stage 4 incurable, as you can see I am still here and feeling great don't ever give up both my drs told me the outcome was in God's hands and he has taken good care of me my onc calls me her miricale patient I thank her for not giving up on me and trying the tarceva without knowing if it would work. If you ever get a dr that wants to give up on you run and find another dr. my first onc told if my cancer came back there was nothing that could be done, if it wasnt for the 2nd onc I wouldn't be here writing this good luck you are in my prayers.   Pat

Jasper County Native

nanaof7 said:

don't give up hope

in 2009 I was dx with NSC adenocarcanoma stage 2 had some radiation and chemo then stop ped and opted for sugery in 2010 I was dx with mets (3) my brain was swelling and I was getting headaches like when you drink something cold too fast I was given  WBR and give 3-6 months to live my onc said if I did well with the radiation she would try me on tarceva my dx was stage 4 incurable, as you can see I am still here and feeling great don't ever give up both my drs told me the outcome was in God's hands and he has taken good care of me my onc calls me her miricale patient I thank her for not giving up on me and trying the tarceva without knowing if it would work. If you ever get a dr that wants to give up on you run and find another dr. my first onc told if my cancer came back there was nothing that could be done, if it wasnt for the 2nd onc I wouldn't be here writing this good luck you are in my prayers.   Pat

Thanks

Thanks for your encouraging words nana, keep on fighting!

Jasper County Native

Good News!!

Praise the Lord!  My wife met with her oncologist today to go over her most recent CT scans and to see where we go from here.  Her scans showed everything is shrinking, which we knew since we got report over a week ago.  Her doc thinks that since everything is "stable"/shrinking, that she doesn't need to start another round of chemo, of course he wants her back for scans frequently to keep tabs oh her, but for now; NO CHEMO!!!!