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Just Jumping In To Get My Feet Wet

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Hello,

I am Wolfen and originally from the Colon Board. I joined in 2009 to support my daughter, Johnnybegood, also a member. What a journey she has been on. Lots of surgeries, colon and liver, rads, and too much chemo to count. She recently underwent a Spleenectomy in the hopes to raise her platelets so she could resume Avastin. It appears to have been successful so now she can attack those little buggers again. She apparently has 38 tumors in her lungs now of the colon cancer mets and is inoperable.

I am rather a lost soul, I guess, as I post on the Colon Board, H&N Board, and Lung Board.  In Oct. 2012, my hubby of 40+ years was diagnosed with  Stage 4 BOT, nasopharyngeal and lymph node involvement of the squamous cell type. Following a lung biopsy for the spot discovered during a PET, he also has  Stage 1 lung cancer of the adenocarcinoma type. He also appears to be inoperable for the lung cancer as it is very near his pacemaker/defibrillator. However, the lung cancer is more aggressive at this point so will be treated first. He'll be starting 10 treatments of rads on Mar. 4. They cannot do chemo and rads concurrently due to his heart condition, diabetes, and compromised kidneys. Some dingbat gave him contrast dye in the PET/CT which put him in CHF and acute renal failure in Dec. 2012. In the ER, another 3 idiots tried to force a foley into him as he vehemently told them it would be impossible due to scar tissue. They succeeded in damaging his prostate and almost closing off his bladder. This put him back in the hospital in Jan. 2013 with CHF again. There has been such a delay in finally being able to start cancer treatments that his original 4 rads for the lung cancer have now become 10, and his H&N treatment has been pushed further back. I am way beyond frustrated. I am ANGRY, ANGRY, ANGRY. They have, in effect, killed my hubby right along with cancer.

A week ago Fri., he had prostate/bladder surgery and this past Tues., he had 13 teeth extracted, chemo port, and feeding tube put in. He's so weak he can't stand up alone. So please wish us luck as he embarks on the most hazardous journey of his life.

Thanks,

Wolfen

dennycee
Posts: 667
Joined: Mar 2011

Sometimes it's slow around here.  You and your family have been through so much you have every right to your anger.  Own it and get it out so you can move on.  Is there a survivors or caretakers group at your hospital that you can attend?  It would help so much to be with others who have had to deal with similar issues.  You may not be surprised to learn that others have dealt with ignorant medical professionals as well.  i had issues with bones breaking that were not from cancerous mets.  Before it was through I had 3 vertebrae with compression fractures and four cracked ribs.  I self diagnosed the problem and told them what I needed.  It certainly pays to educate yourself. 

Your husband and daughter should be seeing specialists if they are not already.  Maybe gnew second opinion or new doctor at one of these cancer facilities.  

http://cancercenters.cancer.gov/cancer_centers/index.html

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Thanks for your reply. I know we're certainly not alone in the world of medical blunders. So many horror stories mixed in with the good.

My daughter is treated at UK in Louisville. The same fine surgeon has done all her surgeries and works closely with her chemo doc. It took her a few tries to find a  good chemo doc. She is quite confident that her team is doing all that is possible. They've been on the front lines together for almost 5 years.

We live 1,500 miles from her in Az., and hubby is being treated at the relatively new MD Anderson here. We were not pleased with our original team, including the ENT who ordered the CT w/ contrast. I have found that most docs don't read any of the medical history, current med. conditions, and current med list which I provide for each and every appt.  I'm thinking of bringing a stapler along. Maybe if it was attached to their forehead.................

MDA is our second opinion. Since this location is fairly new, they are not yet all inclusive as far as non-cancer specialists, but do seem to have fine teams of doctors. Hubby has existing specialists for his various med. conditions who are more than willing to work with the MDA team. Since there's been such a delay in getting started on treatments, I'm sure they're trying to play catch-up as I'm sure time is of the essence. Even these docs have to play it by ear to work around the other problems. I would imagine they've dealt with patients similar to my hubby, but as you know, each of us is different.

I just repeat the mantra of my friend Bruce(from the Colon Board): Never, Ever Give Up!

Luv,

Wolfen

dennycee
Posts: 667
Joined: Mar 2011

It's important that we get the message out about second opinions.  Your experiences are a great example of reasons why.  I really love having my port.  It has saved me from many pokes.  It will be easier on your husbands system.  What chemo doublet are they giving him?  Did they take a large enough sample at the bx to do any mutation testing?  You've probably experienced coping with side effects of chemo with your daughter.  Many of the chemo agents are the same (but you know that).  Has her doctor recommended her for the new chemo that has proved so well for patients with colon mets?  Regorafenib?  My friend was approved for compassionate use when they approved it early.  

My mantra is more a statement describing my major personality flaw:  I am very stubborn and set in my ways.  It just so happens that I am alive and stuck in that way and not about to let that change.  

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I've seen so many peolpe who say, "If Only....".  Just read about a gal whose hubby's port was put in updside down! Several have suggested second opinion to her, but she appears adamant that their team is one of the top in the area. To me, an upside down port would be a red flag.

I don't know about the mutation testing. I'm assuming that he's KRAS mutant as one of the chemo protocal will be Erbitux weekly. I don't have that criteria backwards, do I? He is also set to receive Taxol and Carboplatin every three weeks. Doc said he will be monitored closely as one is rough on the liver and the other rough on the kidneys. I also need to ask about the HPV factor.

I think hubby dreaded the G-tube more than the port, but we are adapting. Nurse had a little trouble accessing port for the first time for labs. Chemo doc was funny, He said "Well, those things are for putting stuff in, not taking it out". 

A few of my Colon Board friends are trying Regorafenib, but it hasn't been suggested for my daughter. She will most likely be put back on Xeloda pills and Avastin infusions. She's been off Xeloda since Jan. this year and Avastin since June of last year. I think the lack of Avastin is what gave the tumors a strong foothold.

I like your mantra. Nothing wrong with being stubborn and set in your ways. I've been called that a few thousand times by my hubby.

Nice talking with you. I'll probably have more questions as treatment progresses.

Luv

Wolfen, 

CraiginPA
Posts: 9
Joined: Aug 2012

wolfen,

I'm not clear on whether the lung cancer is an independent primary (lung cancer) or a met to the lung from the other cancer.

If it is lung cancer, testing for a driving mutation is not usually done unless the cancer is considered incurable (stage IV lung cancer) with evidence that cancer cells are wandering elsewhere.  At that point, if there is a useful driving mutation, it might be possible to control it for a number of months with an inhibitor drug for that mutation (and then sometimes more months with a 2nd or 3rd generation drug).  The best known driving mutations are EGFR and ALK, but I have ROS1 and another new one called RET seems promising.  There are others in clinical trials, too, usually borrowing drugs from other kinds of cancer with the same mutation.  The not-so-useful-yet KRAS mutation is common in smokers' adenocarcinoma of the lung and they are usually exclusive of each other, so testing often starts with KRAS and steps through the others to try to find a match. 

Per wikipedia, Erbitux is an EGFR inhibitor for colon cancer that does *not* have a KRAS mutation (i.e., KRAS "wild type"), but I don't think it is effective (alone) for EGFR-driven lung cancer -- they are somehow different, I think.  However, the combination of Erbitux (cetuximab) + the experimental drug afatinib seems a good combo for EGFR-driven lung cancer that is no longer responding to Tarceva (erlotinib).

So if for some reasons the lung cancer is considered an independent primary from the lung (not a met from elsewhere) and if it is in such a difficult place that it is unlikely to be cured, there might be value to asking your oncologists about testing the lung cancer for a driving mutation, just in case there is a drug that might help.  It would be better, though if things like chemo, radiation, or surgery could be done to try to eliminate it because those offer a chance of cure (for an early-stage lung cancer).

Best hopes,

Craig in PA

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

For the mutation explanation. After I thought about it, I should have realized that I had it backwards because my daughter has never been put on Erbitux and I remember now, her telling me that she is KRAS mutant. You'll have to forgive me for thinking in colon cancer treatments, but that's been my main focus for almost five years now.

Her diagnosis left us reeling and now with hubby's diagnosis.........Well sometimes, it's just too much. I try to stay on top of things with each of them, but just get lost sometimes. Fortunately she has a great family support group around her, but being the Mom, well,  you know.

Hubby's lung cancer is a second primary per the chemo onc and rad onc. Both said that no lymph nodes lit up around the lung tumors, for which they were glad because they were very hesitant to do surgery in that area. I also remember the chemo onc saying that there is a better chance of knocking out the lung cancer if it was a second primary, rather than a met.

As for the chemo, I'm assuming they are targeting both cancers. The H&N tumor is quite large and appears to be elongated growing up toward the eye socket. Not knowing much about lung or H&N, that sounded more serious to me, but chemo onc says that H&N will stay more localized longer than lung will. If lung spreads, they fear they can't do much.

He has finished his first week of lung rads. His ribs are sore from the strap that holds him still, but no red marks yet. However, I know that rad side effects sometimes don't appear until after tx finished. They said he may have trouble swallowing because of the esophagus, hence the G-tube. Of course that would almost be a given with the H&N rads that are planned. Because of his other physical problems, it seems that H&N surgery has been moved to the back burner also. It appears to me that all other H&N patients had surgery, so don't know what the outcome will be.

Just trying to get calories into him along with hydration. And putting one foot in front of the other each day.

On a side note, talked to my daughter tonight. She sounded pretty good and is meeting with her onc on Mon. to discuss resuming her Avastin.

Luv,

Wolfen

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