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Help. Panic.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I am near panic and just need some input from you guys. My daughter is fine, off to a St. Patrick's dinner with friends. Feels great. To recap: Diagnosed at age 32 stage IV in Aug. 2011, 6 weeks after the birth of her first child. Had the cancer and symptoms during her pregnancy. Had Folfox for about 4 months and it "stopped working." CEA stopped dropping. Off chemo for LAR, then resumed chemo, this time with Folfiri. Theraspheres to liver, first lobe May 2012, other lobe June 2012. August - CEA rising. Dr. stopped treatment with no other plan in place. Gave up on her. We were scrambling - Suzanne Lindley of Beat Liver Tumors and others telling us that CEA can go up after Theraspheres, don't let Dr. stop treatment. But he did anyway.

We went elsewhere and got her back on treatment Folfiri/Erbitux now - and come to find out, CEA was going back down after all. Was at 885 to start at new cancer center, Aug. 2012. Came steadily down, was around 29 in late October, scan then showed "stable." No growth, no spread. CEA continued to drop, got as low as 10.2, stayed there about a month, Dr. continued Folfiri with Erbitux. PET scan 1/25/13 showed uptake of 4 in couple areas in liver, 3.5 at site of colon anastomosis (where it was reconnected after tumor cut out). Also had colonoscopy with biopsy of inflamed area of colon, showed "inflammation." "Diversion proctitis." Colon actually looked better than it had a month before, and ulcer was healed.

Had never had a PET scan before, this was first. So doctor wanted to continue for 6 more treatments and re-scan. Well, CEA has gone up some, was 13.4 at time of PET scan 1/22/13, then 15.8 on 2/11, then 17.6 on 2/25, then 24.1 on 3/11. Doctor saying not enough of a spike to be concerned yet (because her tumor was high CEA producer), and she had a badly infected toe from the Erbitux. Treatment continued with plans unchanged. Another scan scheduled end of April. Then plans for possibe Cyberknife/Theraspheres if still needed. Dr. said she did not want to change course at this point, so close to scan, wants to know when she has scan if treatment helped, etc. w/o adding something else to the mix.

So... my daughter and her husband are comfortable with that. I am beside myself with panic, could jump out of my skin. Could just scream and scream. She still feels great. I know that means nothing. I am worried treatment has stopped working. AST, ALT and bilirubin are at low end of normal. Alk Phos high, 300. Has been high from the start. I just want them to go ahead and do the &%#$ scan. They will not scan until at least 3 wks after last chemo. She is to have 2 more chemos before scan, next one 3/25.

Do I have good cause to panic or should I chill out and trust doctor? Don't want to scare my daughter.

Sandy

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

It is hard not to panic when it is your daughter. But maybe you could take it in steps ....looks like she gets her CEA done every 3 weeks, so at that time reevaluate it again. My doctors don't like to do the pet scans more than once every three months and sometimes insurance only covers that time frame. So sorry you are going through this and will be thinking of you, your daughter and her husband and your beautiful grandson.  ~ Ann

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Double post

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry your daughter has to go through all that.She should have the doctor explain why she's doing things the way she is.When my cancer spread to my liver I did 5fu,folfox,oxyplaton,avastin befor surgery[7/15/2012],andnow I'm clear with a cea of 1.1.I did 2 pet scans,and 3 ct scans.She must trust the doctors,and get as much info as she can.Good luck,and don't panic.

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

Sandy, your concerns raise several issues.  I am not sure how to best facilitate or insist on the scan without a clear indicator.  My take on a monitoring alternative, and another provider:   

I have trouble getting my wife to scan. It took an extra 4 months this time but she is well monitored with (extra) blood tests, extra series like LDH, CA19-9 (she is also tumor tissue confirmed on CA19-9) + ESR, and MCV (for 5FU effectiveness, not sure about with irinotecan).

-----

At this point, I never trust a single source/supplier.   I intend to be ready with the next possibility/treatment/provider asap.    

Now there are many reasons to be careful with Theraspheres.  They can do very well, however one treatment too many can be a very bad thing.  I've noticed some abrupt disappearances on the boards. So I try not to be critical of treatment refusals.   I dig in and try to find either someone or something better.  I bear in mind that treatment refusals are likely not arbitrary but not comprehensive either.  You seem to have been successful after the Theraspheres episode by going to CTCA.

I think we have to keep open lines for providers of last resort, best with some preparations ahead.  We want someone or someplace that will help us if we are not ready to just "go home" or to hospice, without jumping out of the frying pan into the fire.  Now in our case, going home is the first choice - I keep a nurse ready, we can video conference the doctor, and have a whole lot of stuff already that will give some options.  Eventually we may have enough for an ICU.  We will not be taken hostage or left abandoned.

 

thxmiker's picture
thxmiker
Posts: 1236
Joined: Oct 2010

Lenz USC

Lowe UCSD  Moore's Cancer Institute

Sugerbaker Washington DC

New Hope Phoenix

Sloan Kettering

 

There is a list of the best in the Colon Cancer. I have met with three of them for my Tx plan.  I know it is not for everyone but when one needs answers, one goes to the best.  I too received a poor prognosis.  I now have a treatment plan, a surgical plan and a healing plan.  Much better then the no hope plan!

 

We are sending out thoughts and prayers for you to find a good plan for you.

Best Always, mike

 

John23
Posts: 1832
Joined: Jan 2007

 

There’s been a terrible overuse of PET scans lately. You have to keep in mind, that every type of scan or xray adds to the lifetime limit of exposure. The PET adds even more, since it uses radioactive glucose with the assumption that cancer uptakes glucose faster than normal cells (the radioactive glucose will “light up”, indicating the cells that are uptaking it). But a “normal cell” that’s attempting to heal itself, will use glucose as fast or faster than a cancer cell!

Surgery, chemotherapy, and radiation all damage good cells, so waiting until the chemo, etc wears off before doing a PET scan, isn’t a bad idea at all.

But as “Tan” said, getting a second opinion should be considered (I personally think it should be mandatory). Physicians are human, and they make as many mistakes as anyone else....and...  they are often too busy to be able to keep up with the latest technology. Getting a second opinion helps them learn about new methods and procedures that they otherwise may never know about.

The CEA test results are often misinterpreted. I posted a link awhile back regarding CEA from an oncologist group’s web site. They told of the dangers of stopping chemo due to rising CEA numbers. Apparently a dying tumor will give off a large amount of CEA. The chemo may be working for the patient, but the misinterpretation of the cause of the rise in CEA; the failure to attribute it to the chemo working, and consequently abandoning the chemical, can do more harm than good.

It’s always been my belief that we should always question authority, but we should also try to have some trust in those that are trying to help.

Cancer is scary, but we shouldn’t allow fear to steer us; we should use our common sense and survival instincts instead. Learning as much as we can about each treatment and practice, can help us make informed decisions, but we should always listen to our own body, too.

There’s no reason to panic; it doesn’t accomplish anything... but if you can diplomatically convince them to get another opinion from a physician not of the same group or organization as their present one(s), then you might be doing them a good service! It never hurts to get other opinions!

Stay well!

John

 

wolfen's picture
wolfen
Posts: 1195
Joined: Apr 2009

My Friend,

I hear the panic in your voice. The first thing I want you to do is BREATHE. Then step back and evaluate the progress she has made with CTCA.

It's so hard when you are the Mom, but you have to remember that our children are grown and although they may accept some of our suggestions on treatment, they're not going to accept them all. I don't like this part either, but we have to let them make their own decisions. I say this only because you mentioned that she and her husband are in favor of the current plan.

As John said, it seems to be a pretty common thing for CEA to rise as tumors die.

I also know this is your second opinion. Perhaps you can make a gentle suggestion in reference to another opinion, but do not panic if she happy where she is.

I suggested to JBG a few times about the large cancer centers we have here, but I knew in my heart she had to do what she felt was best for her and her family.

I'm here to talk anytime you need me.

Luv,

Wolfen

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Sandy. I've been concerned about you and your daughters situation for a while now. You've recently been making comments that suggest you've been having a hard time coping. I think it's great that you've brought your concerns to the group. Having said that, I have nothing to offer. I really don't know what advice to give you. I would just say that I have learned that it's very risky to just trust the doctor and go along with their recommendations. I'm sure it's very tempting to just relax and follow the oncologists plan. I understand that you don't want to upset your daughter. However, you don't want to have regrets IF things start to fall apart. Follow your gut. Talk to your daughter and suggest she get another opinion. We all have to tread so carefully. Each decision can have such major consequences. It can't hurt to get another opinion. I'm so happy your daughter is feeling good and getting on with her life. I saw your pictures on the other thread. She looks so healthy. Who would ever guess that she has been through all that she has? You have a great looking family. Please remember to look after yourself. You have to stay strong in order to support your family.

Chelsea

jen2012
Posts: 1219
Joined: Aug 2012

No advice to share...but i do share your anger frustration and worry. Its damn unfair that what should be the best years of her life are spent with this worry. She should be stressing about potty training...not living. Im really sorry but as wolfen says there is not a whole lot you can do...just be there for her as i know you are. Screaming with you and then sending healing thoughts for you and your daughter.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I talked to my daughter and I am going to call there today and talk to her case manager. My daughter loves and trusts this current oncologist and she and her husband want to continue just the way things are going - after all, this is the doctor who jumped in and got her cancer stable after she was written off by the previous one. And she is doing so well now - she was very, very sick. THEY do not want to change anything right now and I think are a little put out that I won't just leave it alone and "worry too much."

So... I will just have to vent here. I do know that this doctor has a different treatment plan in place if the Folfiri/Erbitux fails. And I do know that she has a plan in place for the remaining liver tumors. My daughter says the doctor is leaning toward Cyberknife. I did not go with her the last time - her husband and I alternate. But I will go with her next Monday. She goes every two weeks.

It's out of my control. All I can do is make suggestions. And we do have another doctor at an NCI comprehensive cancer center lined up for a third opinion if needed. Actually, we have two, one at each NCI cancer center in this state. I have been in contact with both of them - one who does HAI (extensive email contact with him personally), and another who is considered the colon cancer "expert" at her NCI cancer center - I've been in contact with her PA several times and they will get her right in if we need to.

Tanstaafl - I'm curious about the MCV and correlation to 5FU effectiveness. Could you elaborate on that? My daughter's MCV started at 86.6 on 10/26/11. On Folfox it dropped several points. It was 89.9 on August 14, 2012, and has steadily increased to 98.0 now. Can you point me to some research I can take with me if/when I discuss this with the doctor? Thanks.

Sandy

Edited to add: Just read several abstracts related to this, also your (Tanstaafl's) earlier posts. So my daughter has achieved the 15% increase in MCV on 5FU/leucovorin, MCV not up to 103 yet. I had wondered if she was developing the larger RBCs to compensate (avoid macrocytic anemia). Now I wonder if it's the 5FU. Looks like the studies deal more with capecitabine (Xeloda). I also wonder, in her case, if the other drugs play into it (irinotecan, ertibux). Curious to hear your thoughts on this.

 

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

but I have had many PET scans (CT scans are unable to detect my cancer until it's really late in the game).  I've had a number of things "light up", with SUVs ranging from 3.0 to 7.0, that later resolved on their own without treatment.  I don't know what these phantoms were, maybe inflammation, but they ended up not being cancer, whatever they were.  Did they do a CT scan along with the PET to look for anything structural to go along with the areas of increased uptake?  Sending a few hugs your way~AA

Edited to add:

I cannot imagine how hard it is to be the mom in this situation.  I would take being the person with cancer any day over that.  You are obviously such a caring and loving mama...your girl is lucky to have you fighting for her.

Chelsea71
Posts: 1170
Joined: Sep 2012

Your daughter is so lucky to have you in her corner. Sounds like you're right on top of it all. Your daughter likely feels like she can relax and focus on her family because she knows that you are paying such close attention to her medical needs. Your nursing background must be a huge asset.

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