Scan News - Not Great, Not Terrible

Greetings ya'll! I hope everyone is enjoying the end of their summers.

I had an MRI done on Monday to see the progress of the last 5 months of treatment and Fran and I met with Dr. Moriarty this morning. The tumor is, of course, still there in my liver. It did grow but not by much.

My last scan was March 18th 2010, but that was post cryoablation and there was still inflammation and swelling so the measurement of that tumor would not be accurate. So since last Oct/Nov the tumor was 1.6 by 1.3 cm., and this measurement was 2.9 by 1.9 cm. There was no new growth found in my liver or elsewhere. The MRI didn't scan my lungs and I am very paranoid about having tumors there, so I asked Dr. Moriarty about that and about getting a CT scan done. He said he doesn't and isn't very concerned that there is tumor growth but he has scheduled one for me regardless.

He also wants to take a different treatment plan approach. It is called SIR-spheres, or (SIRT-spheres) and is another targeted, localized therapy like ablation but it involves radiation without damaging healthy liver tissue.

Dr. Moriarty wants us to see a Dr. John Nosher out of Robert Wood Johnson in New Brunswick, so we will be setting that stuff up over the next week or so. Since we are looking at a different treatment option path I get a bit of a break from chemo and erbitux Hurrrrrayyyy!!! That made me very happy to hear, part of me didn't care what the reason was, I am just so happy to get a break, give my family a break, and be able to focus on getting Sydney settled into first grade, and Ethan into his last year in preschool, or rather pre-k (just to be official).

The reason(s) Moriarty is changing things up, is, to my understanding,

1. because the spheres work by flowing through the blood vessels feeding the tumor - and a major one (the inferior vena cava or IVC) is. I am a good candidate for this procedure,
2. it gives my mind and body a break from chemo, and if it's successful will give me more time with a hopefully dead tumor until some new treatment comes down the pike.

I do have chemo options (thank God), but this is just another treatment we can use to get this tumor defunct.

So it's kind of a mixed bag of emotions. At the end of the day it still rots to have cancer. But I am grateful that being someone that has stage 4 CC, has it in one localized area and that in the past year it hasn't grown much or anywhere else due to the different treatments I have been able to get.

I am also very grateful to have Dr. Moriarty as my oncologist. He has never been idle in treating me and this stupid disease. I know I wouldn't be here if it weren't for him.

When we get the full picture of what's going on next I will definitely be updating. I hope everyone had a great summer. We had an awesome time going camping, going to Texas and we just returned from an amazing time in Topsail, North Carolina playing on the beach everyday. The summer went by so fast, but I am looking forward to the fall and some cooler weather, and seeing what the next few months hold for us.

God Bless.

Love,
Karen

Lowest CEA level ever...

Karen's had a terrible time this chemo round but there is good news to share. Her CEA is down to 2.9, a record low. One of our nurses (Kathy) called especially to tell us.

When Karen was first diagnosed, her CEA was 628 [LINK]. It declined on 5FU + Avastin to roughly 40. After surgery and being off chemo for a while it had gone back up to 200+. Now it's practically normal. (normal range is 0-2.5). We'll TAKE it.

This is fantastic news and signs that all the hard work Karen has put in is paying off. I am sleepless due to the wrong timezone and figured I'd be productive and share.

Thanks to all those who've emailed and sent words of encouragement. It's hard to convey without going into gory details but chemo is brutal. Brutal is not the word. And we both want to just pack it in, but random emails of encouragement and good news like this help keep things on track.

3rd Chemo (of 4) & Camping

After a wonderful break camping in PA, Karen's back in chemo again. Today she had her 3rd treatment of CPT-11 since the last scans. As you may recall Karen gets CPT-11 every 3 weeks and Erbitux every week. She's having some "toxicity" to the Erbitux and so was given a break from that this week.

The CPT-11 is causing slurred speech and so the treatment was stretched to 5 hours instead of 3. Despite the slower IV, Karen got extremely nauseous and experienced some gagging and dry-heaving. Some heavy anti-nausea meds were added to the protocol and a big bag of fluids. All-in-all we got to the hospital at 9AM and left at 5:30PM.

As I mentioned we had a really great few days away with the kids. We chose to rent a cabin and didn't rough it too much. The trip included stroking a frog, waking a butterfly, feeding some goats, an underground cave, a trip to the Zoo, the Science museum, swimming, paddle boats and a beautiful sunset. The kids did great and it was terrific to spend the time with them and share in their fun.

I'm traveling on business this week from Tuesday which is not great timing. Karen will have her sister Sarah as company. As with all chemo weeks, we hope the week goes quickly.

A Key Weekend for Cancer Patients

Karen's doing well. She'll undergo another round of chemo tomorrow so we're mentally preparing for the week ahead.

We've spent the last few weeks battling our insurance company. There are numerous issues but I have been protesting one particular charge (> $1000) since October 2007. Countless phone calls, numerous emails and two written letters later, there may be some movement on it. Until we get the money back I'm not holding my breath.

We actually have pretty good medical insurance (Lord knows we pay for it) but even with that, we consistently get charged for in-network services at the out of network rate. If you don't constantly monitor and run your own analysis it's easy to get over-charged.

Incidentally Karen's current total is up to $367,000 roughly. I only mention it in wonderment as I cannot imagine how hard cancer is on families without adequate coverage.

This weekend the American Society of Clinical Oncology (ASCO) will host their annual meeting (May 30th-June 3rd) in Chicago, Illinois. This is a key meeting as many drug companies, researchers and scientists will discuss their current research as well as unveil the results of the trials they've been executing.

I'll be watching the AP for potential news.

Happy Birthday Karen

Today's Karen's birthday! Happy day. Karen gets a double-whammy this year with Mother's Day falling on Sunday.

Let me start off: Sweetheart, I want to wish you the happiest of birthdays. You're an amazing person whom I'm so proud of.

I love you and Happy Birthday!

Unfortunately Karen's still not feeling 100% after last week's chemo. She visited the hospital on Wednesday and seems to have contracted a virus. Karen'll receive Erbitux this morning and hopefully some fluids to pep her up.

We should get the radiologist's report today also.

Consultation Update

Karen's on chemo again and all that that brings. Nausea, sickness, etc. Otherwise doing well.

A quick update is warranted; We met with Dr Moriarty today at Overlook. The idea was to review the scans that Karen had taken this Tuesday.

Unfortunately the radiologist has not read the scans as yet and hence no written report was available. However, Dr Dan did walk us through them in somewhat layman's terms. He showed us the scans taken back in February 2008, before this session of chemo was initiated. Those were not pretty and it was very hard to discern what was going on in Karen's liver. The right lobe was consumed with white fluffy stuff. The desired pattern is clear, uniform grey. Her left lobe also had a few small-ish spots on it, signifying tumors.

These last scans are markedly different. Her left lobe is fairly clear with the exception of two necrotic things where the tumors were. The right lobe is much clearer, with the exception
of what looks like a large crescent moon shape. This might be tumor cells or it might also be inflammation. It's surrounding a dark area the size of an orange, which is almost certainly a dead tumor.

Overall this is a great result, we'll still wait for radiologist confirmation of this early next week.

A week from Tuesday, members of Overlook from all disciplines will meet for a conference, during which Karen's case will be reviewed. Dan wants as many eyes on it as possible. There are still many options available to us and he wants to make sure we pick the right one. For now we're sticking to chemo.

We are bolstered by today's news and continue to believe Karen is getting the best treatment possible.

5th Erbitux Treatment

After another tough week, Karen's starting to feel better. She had chemo on the 28th and normally is feeling a little better by the following Sunday. This time the nausea, tiredness and crappy feelings hung around all week. She's been having massive cramping and gas among other problems. On the 6th she had her 5th Erbitux treatment. This has been tolerable but caused a huge rash and lots of related problems. The pain in her side was written off to just things settling down. Her liver function is normal and it is not enlarged by any means.

To cap things off, she ended up in hospital yesterday unexpectedly due to de-hydration. A few hours hooked to an IV solved that.

Surely all this indicates the drugs are working and we can expect great scans in another 8 weeks?

Since she's on CPT-11, her hair has given up the ghost and is falling out in determined fashion. I don't think even with her thick mane we can avoid shaving this time around, although Karen's full of surprises.

Despite paying our life insurance last Jan, they called this week and said we were late by over a month and that a LAPSE notice had been placed on our policy. What a bunch of balony! Of course our payments are well documented so they had to admit the inaccuracy.

In other financial related news, Karen has already met and exceeded our yearly out of pocket maximum yet our medical insurance continues to bill us. I need to call them.

You know what though? Life goes on, we are full of resolve, our marriage is as strong as ever, the kids are a tremendous joy to us and we're going to the circus as a family on Thursday. So screw cancer.

4th Erbitux, 2nd Chemo Treatment

Karen's been having sharp pain in the right side of her abdomen the last 24hours. This is similar she says to the pain experienced when she was first diagnosed. We are not sure but are hoping this is shrinkage or some other good effect of being back on chemo.

Tomorrow she'll go for the 2nd chemo treatment but 4th Erbitux treatment for those keeping track. This'll knock her out for a good few days but overall is still less of a burden than the original regime (another "easy for me to say").

We'll ask Doctor Dan what the pain means and perhaps he might have some suggestions although with only external exam it's very hard to be sure what's going on.

1st Erbitux + Chemo Session

I will update quickly tonight although truly not in the mood. Karen went back on chemo last Thursday (Feb 7th). Her new protocol is CPT-11 (chemo) every three weeks and Erbitux every week. This will continue for 12 weeks at which point a PET and CT scan will be repeated.

Erbitux is scheduled again on Thursday the 14th, (Valentine's Day).

Karen's baseline CEA from last Thursday is 230. Before surgery it was way down in double digits so this is quite a jump. However we must remind ourselves that she's been off chemo for some many months. Hopefully the next measurement will be lower.

Surgery Results

Yesterday was a difficult day. I only have a few minutes so will keep this brief. Karen's surgery did not go as expected. Additional tumors were found in her left lobe which meant the right could not be removed as planned. The surgeon burned all tumors but did not remove any of the liver. The surgeon believes the tumors in her right lobe may be resistant to the chemo. We will discuss options today, one of which may be a 2nd surgery in the future.

Karen developed a mild fever during surgery, her platlet count is low and she may need a transfusion in the coming days. Otherwise she is doing ok.

I know everyone is praying for us, thank you for that. Please keep up the prayers as we all really need them at this time.

11th Chemo - Pump Removed

Karen's doing well. Today as always the chemo pump was removed thus completing the eleventh dose. This was the last administration of chemo between now and the surgery and we're looking forward to the next four weeks of Karen regaining her strength.

Even before she went to the hospital today, one of the nurses from the oncology department made a point of calling the house this morning to inform us that her CEA has once again gone down. The present value is 52 (down from 72 last time) so that's tremendous and we're needless to say relieved at this news.

I continue to work on the insurance issues but have every confidence that'll get resolved. I will post more details of the surgery as we get closer to the date.

I will sign off now with thanks once again to all who've helped us out both mentally and physically as it makes a world of difference.

11th Chemo Session

Karen's doing well, peacefully sleeping off the effects of her eleventh chemo. Between one thing and another I am a day late in my updates. Thanks to Cynthia who paid a surprise visit from Dallas on Saturday. It was great to see her and as always Cyn was a big help with the kids.

Things are firming up now. Karen's surgery is set for the 23rd of November, the day after Thanksgiving. We have a number of appointments, screens, tests, scans and consultations leading up to that. Not to mention the minor detail of how to pay for it still hanging out there. These are all tactical items and very manageable.

Shaken but not stirred: We have recovered after last week's ups and downs are moving ahead with a positive and determined attitude. It bears mentioning once again that Dr. Dan is a tremendously caring individual and we are very grateful for all the efforts he has put in thus far.

Since last week a number of folks have written notes, lit candles, sent mass cards, said prayers, held masses and so on. This is tremendously encouraging. It reminds us that we are not alone in this journey and we are very grateful.

Some very encouraging news came today in the form of the biopsy results from Karen's last colonoscopy. Dr Lipsky took numerous biopsies from inside Karen's colon in the area where the primary tumor had been. After analysis in the lab, these tissues have all come back negative for cancer which is great news.

This is just additional tangible progress and we're chalking it up as one more in the win-column. If there was a sequence of events by which a patient would make a full recovery than surely Karen is on that path.

10th Chemo - Pump Removed

Karen's sleeping soundly since about 7:45pm this evening. She ate some cheerios at 7pm and felt like passing out so had to go to bed abruptly. This of course left Sydney and Ethan in a bit of a state but they settled down eventually.

Today the pump was removed. Karen's counts were low last week so tomorrow she'll jab herself with Neulasta to begin building up her white blood cells (WBC).

Dr Moriarty met with Karen and told her that he has spoken to Dr Ravikumar (our surgeon) and given him all the latest results and scans. Dr Ravi is willing to do surgery and optimistic about the results. In his own words "you are young and I am experienced. Together that's a good combination". We don't have a concrete date as yet but expect surgery to happen some time in November.

Today was our nine year wedding anniversary. We will celebrate in earnest when K's feeling better. For now I am content to have spent the night watching TV beside her whilst she sleeps off the chemo.

This time next year we plan to be checked into a horribly expensive hotel somewhere around the 23rd South parallel.

10th Chemo Session

Karen is doing well. She's sleeping soundly whilst hooked up to her chemo pump for the 10th time. Last week chemo was canceled in favour of giving Karen some time to recuperate. Karen's CEA was down to 72 as of last Monday, Sept 24th. No blood was taken today and so we'll wait until next time for a new CEA.

The next session will be in three weeks on October 22nd.

The 10th chemo in the 10th month! I can't believe it has been 10 treatments and over 20 weeks since we started "life with cancer". Chemo's cumulative effect is exacting a heavy toll on K's body. This has been a summer filled with many chaotic highs and lows and one we will not soon forget.

With everything going on I am long overdue in thanking people. Sarah who has been with us literally since the first visit to the emergency room took Karen to chemo today. Thanks Sarah, we'd be lost without you. Also to Karen's Mom who looked after her grandchildren today (and likely tomorrow also). Thank you. To Kate and Chris who took the kids out Saturday allowing us both to get some rest. Many thanks.

Lastly, it may not seem like much but the notes, emails, phone calls and so on from family and strangers alike really do help keep Karen going. Although we are 10 treatments in we are not out of the woods yet.

I understand folks don't know what to do and perhaps imagine we'd rather be left alone but it is always welcomed whenever we do get a call or email. So thanks to all for that.

Surgery Update and No Chemo

Karen's been sick the last two weeks with the exception of yesterday. These weeks have been some of the hardest yet and Karen hasn't been able to do much of anything. At some point I should write down what chemo is actually like as I don't think folks really understand. I know I didn't.

She was scheduled for chemo #10 today but upon examination, Dr. Moriarty decided to give her a break. She's doing well today and grateful for the rest.

There is also talk of switching her from chemo every two weeks to chemo every three weeks, just until surgery. This will help regain her strength. This is not definite but let's see.

We met with Dr. Ravi last Friday. He was pleasant and confident. He spoke quickly and to the point. Overall we were pleased with the encounter.

Dr. Ravi would perform at a minimum a removal of the right lobe of Karen's liver. That brings with it the gall bladder. The colon surgery may or may not be done at the same time.

Unfortunately he did not commit to a surgery date citing the CEA level as being too high and one of her tumors being too close to an artery. It appeared though that he had not had time to review the latest round of test results.

Moriarty promised to call him and review Karen's case again to determine a more definite course of action. I hope they figure it out as it was very tough to leave Ravikumar's office without a date.

Karen's last chemo on September 11th was the last time she received Avastin. She has to be off this for at least 6 weeks before it's safe to undergoe surgery. Ravi prefers to wait 8 weeks just to be safe. He has a zero-mortality rate so I guess it pays to be cautious. That puts us sometime in November at the earliest.

The next chemo session will be next Monday.

9th Chemo - Pump Removed

Karen's sleeping off the effects of her ninth chemo session. Despite all the good news this has been a difficult few days but she's hanging in there. It's not easy raising a 3 year old and a toddler whilst every cell in your body is being attacked by poison. Add to that the fog of medication, nausea and side effects along with life's "standard" set of problems like constant medical bills, lost keys, a cracked windshield, leaky pipe etc. etc. Ok, enough complaining.

Today the pump was removed and K got an updated CEA reading; Last time the CEA had dropped from 156 to 140. This time the CEA is...92!!! That's right, double digits. This is yet another good sign and I'm really delighted with the news.

You have to hang on to every little bit of good news and keep focused and that's just what we're doing. Thanks to all who've sent notes of encouragement. They really really do help and we're very grateful for the support.

Magnetic Resonance Imaging

Karen's doing well although slightly apprehensive. She had an MRI today. Combined with the PET and CT Scans from last week the MRI will form a complete picture of Karen's cancer. We meet with our oncologist tomorrow to review the results.

Karen will also have chemo tomorrow for the 9th time.

8th Chemo - Pump Removed

Karen's doing well but very tired. All normal. The pump was removed today for the 8th time. We learned her CEA has dropped down slightly to 140 again. This is good news and no doubt the effect of the CPT-11.

We are still working through identifying a surgeon but are zero-ing in on one of the best, if not the best liver surgeons in the country. Not in Sloan Kettering by the way. CT and PET scans have been scheduled for the 5th of September with an MRI the following week. It's going to be a busy few weeks.

8th Chemo Session

Karen's currently undergoing her 8th chemo treatment (the 4th "round"). The pump was hooked up yesterday whilst Sarah looked after the kids (thanks Sarah). Karen was able to sleep some of today whilst Sarah and mom took the kids out for the day (thanks guys). Karen will return to hospital tomorrow to have the pump removed.

Karen's still on CPT-11 and it's still kicking her butt. The nurses and Dr Moriarty were all surprised to hear how rough CPT-11 had been on her the last time. It's due no doubt in part to Karen's petite size and also that this is her 8th treatment.

This week I got a number of emails from folks who're either cancer patients or caregivers, some of whom are having a hard time with the chemo side effects. In the interests of sharing information with folks I've gone through Karen's drug-bucket and listed the various medications she's on besides the chemo. Many of these are substitutes with the alternative in paretheses.

• Fluconazole (Diflucan)
• Lorazepam (Ativan)
• Naproxen
• Temazepam
• Docusate Sodium
• Amoxicillin
• Prochlorper
• Dexamethason
• Compazine

These are basically anti-nausea for the most part. Hopefully this gives you something to talk to your doctor about.

Seventh Chemo - Pump Removed

Karen's sleeping peacefully but the last few days have been tough. As I mentioned last time, her chemo was changed to include Camptosar (aka CPT-11) and this has really been hard on Karen's system.

K spent much of Monday, Tuesday and today sleeping, on average 18 hours per day. This has meant limited time with the kids which is frustrating for her but more importantly limited time eating and drinking. The pump was removed today as usual but this time the nurses saw fit to give her a bag of fluids along with an exam from the Dr Lowenthal (a member of Moriarty's group).

Lowenthal gave K a complete exam and reviewed her chart. We were worried for a moment that she might be admitted. He commented that she has been making great progress, despite the extremely debilitating side effects. He also remarked that the doses of drugs she's on are pretty high. This is not the first time we've heard this and it explains why she's hit so hard each time.

We believe that given Karen's age and overall strength that the doctors are prescribing the most aggressive treatment possible and are confident that this is the best approach to treat her disease.