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

Surgery before Christmas?

Karen's doing well. Earlier this week Karen managed to get a cancellation at the surgeon's so we met with Doctor Chamberlain today. We are a few steps closer to a concrete plan.

The location of the tumor is above a critical vein in Karen's liver. Normally you'd have 2 or 3 veins going in and out of the liver but because of Karen's resection she has only 1 left. That's not a big deal but the location of the tumor is fairly close to this vein and that makes surgery very difficult.

Our best option is Radio Frequency Ablation which involves burning the tumor with radio waves. The radio waves must heat the tumor to 70C for a 14 mins in order to get a good kill. The vein will act as a heat sink since blood is flowing through it, cooling the cells. It is also likely that the radiologist will not want to burn that close to the vein.

To get the remaining cells we'll resort to Cyberknife which is targeted radiation. This can get close to the vein which will tolerate the radiation pretty well. On the flip side the liver doesn't tolerate radiation very well so we're trying to minimize the amount of radiation by using the RFA first.

The game plan is yet to be confirmed but Chamberlain is trying to get us in next Monday or Tuesday (21st or 22nd of December). The RFA would involve a night or two in hospital but overall be non-invasive. The Cyberknife would not be done until a few weeks into January.

Appointments are still being made and hopefully we find out tomorrow what the schedule is.

Conference Debrief: CyberKnife

Karen's doing well. We met with Dr. Moriarty this morning and he debriefed us on the conference that took place this week (Tuesday) at Overlook. He was rather serious but understandably so.

From what we could discern this is a coming-together of various experts and leaders in various disciplines, radiology, oncology, surgery etc.. The agenda is to review key patients' cases both in terms of knowledge sharing (how the patient is doing) as well as idea generation (where to go next).
Not that Dr Dan doesn't know what to do next but rather he wants to solicit input and guidance from a wide audience to get the best possible outcome for Karen.

Dr Dan told us the group was VERY impressed with her. The group reviewed ALL her scans, all the way back to April 2007, not just the last set. Without treatment this time last year, she'd no longer be with us. Thanks to the treatment plan and her determination we are in a much better situation. Her tumors have shrunken, some have died. Microscopic disease is likely still around and we'll continue on chemo for that. The next step is to decide what ELSE we can do.

There are a couple of options;

• Surgery - to remove what she has left in the liver.
• Radio Frequency Ablation - To burn what's left.
• Embolization - to remove the tumors' blood supply and kill it.
  
• SirSpheres - to Irradiate what's left with tiny tiny bits of stuff that carry radiation into the tumors.
  
• CyberKnife treatment - This one we talked quite a bit on and I think it's where Dr Dan is leaning.
  

The CyberKnife system uses a particle accelerator combined with a real-time imaging system as well as "seeds" placed in the liver to directly target the hyper-metabolic activity (tumor) and kill it.

The procedure is painless and done on an out-patient basis. It's also extremely accurate with radiation being targeted to the sub-millimeter. As if that wasn't enough the entire procedure is done by robots!

There are a number of videos on YouTube that describe how it works. This is truly next-generation technology and YES our hospital (Overlook in Summit) has one.



Dr Dan is away to Africa for the next two weeks and we'll talk more about this when he gets back. Until then, chemo is the order of the day.

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.

CEA Result

One of the nurses called today, completely out of the blue, with some amazing news: Karen's CEA is down from 237 to 65!!! This is great news and something we were not expecting. This type of impromptu call is also an example of the great care we are receiving at Overlook and how much the team there takes a personal interest in the patients.

3rd Erbitux Treatment

Karen's doing well. She had her third Erbitux dose today. Dosage days are iffy but the largest side effect is a skin rash which is proving bothersome but tolerable. CPT-11 will be given next week (the 28th) which will knock Karen out for a few days. Other than that the regime is going ok (easy for me to say) and Karen's doing a great job coping with everything.

In happier news; Sydney turned 4 this week and we had a lot of family fun with her. Photos are available on Picasa for family and friends, email us if you'd like the link.

Starting Over

The last week has literally been an incredible roller coaster of emotions. Karen had a CT scan last Monday (Jan 28th). Dr. Dan was away at the American Society for Clinical Oncology's 2008 Gastrointestinal Cancers Symposium all week so rather than wait for his consultation we decided to get a CD from the scan and look at it at home.

We have some experience looking at these things so this wasn't as crazy as it sounds. Unfortunately we were not prepared for what we saw. Karen's entire right lobe shows up engulfed in tumor. After thinking about it for a while we concluded this must be inflammation from her RFA burn in November.

The radiologist's report came through on Thursday and our nurse Nancy walked us through some of the salient points over the phone. Unfortunately this did not sound good at all. One of her tumors which was 5.6cm is now 10.5cms in diameter. The report made mention of increased growth, progressed disease and so on. So naturally we both lost it and have been struggling pretty much all week. I did not update the blog as I just couldn't bring myself to do it and besides, we didn't truly have things from the horse's mouth.

Today we met with Dr. Dan. He was firm and confident as ever and he walked us through the scan results. We learned a couple of things:

1. The radiologist's report was given by taking the scan as a point in time and not in the context of Karen's RFA. Hence a lot of what is seen on there IS due to inflammation.
2. Many of the larger tumors have a "classic" ring of calcification indicating necrotic tissue.
3. RFA does tend to cause more inflammation and hence increased tumor size than other treatments.
4. Karen does still have cancer and it's still growing in there so it's time to start chemo again.
   

He also laid out the new plan; Erbitux and CPT-11. Because she is still healing from the incision, she cannot start back on Avastin but rather than give things a chance to grow, Erbitux will be introduced.

Erbitux is a very new drug [LINK] which works similar to Avastin in that it blocks the tumor from binding to a certain protein it needs. The result is that the tumor shrinks and dies. It's insanely expensive and I need to check with our insurance in case we need pre-approval.

Karen will start chemo (CPT-11) on Thursday (7th). On this plan she'll receive chemo once every 3 weeks and Erbitux (which is technically not a chemo drug) every week. This'll continue for 12 weeks after which she'll have a PET and another CT scan. There are side effects which I'll cover in another post and probably a few other surprises in store but we'll deal.

Net-net we've had some very hard, very dark days this week but we are still kicking and remain confident that Karen is getting the best treatment possible.

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.

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.

Seventh Chemo Treatment

Karen's doing well. I always like to start off the posts with that statement. That's the most important nugget in the whole post.

Today Karen had her seventh chemo treatment. Nicole went with her (thx Nick) and I stayed home with the kids. We had a VERY eventful day between work, play and a visit from the plumber. That's another story.

Karen's day was also pretty busy. As usual she met with Dr Moriarty for an exam. The chemo regime was modified today to replace Oxaliplatin with a drug called CPT-11, also known as Camptosar. It's not commonplace in the USA yet but new studies in Europe have demonstrated the effectiveness of switching up the chemo regime with this drug before surgery. Karen had an allergic reaction to Oxali last time which was another reason to switch. Gotta love Dr Dan for staying on top of things.

Karen also got the prescription for her next round of scans. These will be performed 10 days after the 8th chemo session and include CT-scans of the abdomen, chest and pelvis as well as a PET scan. Personally I'm excited for these as they'll be the make or break as far as whether surgery is approved.

Tonight she's feeling shakey but in good spirits, as am I.

Sixth Chemo Treatment

Karen is exhausted and pale as a ghost but doing well. She had her sixth chemo treatment today. Karen likes to get there early, 9AM usually and today the chemo took all day, until around 3PM. She had an allergic reaction to Oxaliplatin (a drug she's been taking all along) and began breaking out in a rash. The nurses administered Benadryl which seems to be the antidote for most allergic reactions (including Compazine).

To combat this next time, the Oxaliplatin will be administered EXTRA slow which will likely take an extra 2hours. Not a huge deal but it does place extra strain on the kids as well as whomever's mind them, not to mention Karen herself.

Today we learned that Karen will not be stopping chemo before surgery, rather they will just stop the Avastin as part of the regime. Avastin inhibits forming new blood cells and it's important to get it out of your system before surgery, otherwise you won't heal.

We also got the names of some surgeons from Dr. Moriarty which we need to go and research, one's at St Barnabas and the other's at Sloan Kettering Memorial. We know next to nothing about either of these places but perhaps someone reading this will know a friend of a friend who's been to one of these places and will write us [LINK]?

Cynthia is coming to visit tomorrow so roll on Wednesday when the pump gets disconnected.

5th Chemo Session

Karen's doing well. We're back to reality today with another bout of chemo. Dave took her to Overlook today (thanks Dave) and she's home with pump at the moment. Karen's blood counts are good so no Neulasta this time around so we're hoping for a good week.

I have a lot of folks to thank tonight. First and foremost huge thanks goes out to Dori Howe & the Howe family who loaned us their beautiful beach house in Long Beach Island this past weekend. Karen and I had a wonderful and restful few days there. It's no exaggeration when I say this is a gorgeous house in a one of a kind location as close to the beach as you can get. Karen got some much needed rest and relaxation whilst I jogged around the island. We even did some star gazing from the rooftop deck. We are both so grateful to have been able to avail of it and will not soon forget our time there. Thanks guys.

We couldn't have gotten away were it not for the hard work of Sarah (thanks sis), Chris & Kate who looked after the kids whilst we were gone. The kids had a great time and it's always nice to know they are in safe hands.

Tumor Fever

Karen's doing well. She still has a fever on and off of about 99.5F with bouts of feeling crappy but it is manageable. I was worried Karen had developed a "super bug" of some kind which wasn't responding to the antibiotics. Indeed Karen herself was feeling very discouraged.

However, Dr Moriarty called her in for a consultation this evening and gave her an exam. The blood work from the weekend came back clear, meaning no infection. They are repeating that to confirm the result.

He also relayed that the entire team had reviewed her case this morning and everyone is pleased with the results (the shrinkage). What Moriarty suspects is Karen has a "Tumor Fever". This is not uncommon and is caused when the tumors "become necrotic" (die). You end up with dead tissue in your liver & colon which can cause inflammation and God knows what.

Naproxin (an anti-inflammatory) has been added to the treasure chest of drugs at the Shanahan household.

So after a worrying few days, we are taking this fever as a good thing. We continue to be impressed by the attentiveness, expertise and level of care provided by Dr. Moriarty and the team at Overlook.

4th Chemo Session

Kate took Karen for her 4th chemo session today, thanks Kate. It was thankfully uneventful by all accounts. Doctor Dan met with Karen as usual and is pleased with the progress. I was able to conference in via speaker phone. Karen's been having lots of pain from Neulasta and he talked about trying Neupogen without me bringing it up. Karen's blood counts are doing well so Dr Dan cancelled the Neulasta shot for this week.

Since this is the 4th session, Dr. Dan has wasted no time and has setup a CT scan for next Monday. In his words, he's "curious" as to the results of the scan.

Lastly, in great news, my sister Teresa gave birth to a new baby boy back home in Ireland this morning after wait for it...7 minutes of labour. Amazing. Congratulations guys and welcome Conor Loughnane. Sydney is excited to meet her new cousin.

3rd Chemo - Pump Removed

Karen's doing well. She had the chemo pump removed today and got a shot of Neulasta to take tomorrow. It's in the fridge next to some yogurt.

Grandma and Aunt Brenda took the kids to the aquarium yesterday. They had a blast, (even the kids enjoyed it) and Karen slept most of the day. Taking the kids during chemo weeks is SUCH a big help. It's better on Karen and just as importantly it's better on them too so thanks for that guys.

K's taking Compazine again (the tongue paralyser) but with Benadryl and it seems to be working. The side effect is complete exhaustion but at least she can keep food down which is important. She's taking a bunch of other stuff that I was going to post but I think I'll skip it.

Two more things tonight: First a funny story that'll give you some insight into Karen's strength. The other day whilst sitting through chemo, Karen left the room to meet with Dr Moriarty. They keep you hooked up to the IV whilst you have your consultation. Once her exam was done she wheeled the IV back into the center of the chemo room and announced to all present "Well....I'm CURED!!!" to which the entire room burst into laughter. Contrary to what you'd think the chemo room is quite an upbeat hang-out.

Lastly, I called the hospital today to inquire as to K's CEA level. It's down to 356. I'm tracking it in a notebook so to-date the progression has been 628 then 511 after 1 chemo, now 356 after 2. This is a very good sign that we are out-pacing the cancer.

I'm going to sneak out now and get her some MaryJanes.

3rd Chemo Session

Karen's sister, Jen took her to chemo today whilst Sarah stayed over and scored huge points minding the kids. This allowed daddy to go to work. Thanks guys.

The chemo regime has not changed, still 5FU, Avastin, Oxalyplatin. This time they changed up the nausea and "supporting" medications. I haven't gotten the full rundown but I'll post it when I do. One thing I know is they switched from an oral to a IV administration of Atavan. By giving the drug through the IV it enters directly into your blood stream and hence has the maximum effect. It's not easy but Karen is amazing and withstood it all with flying colors.

They also re-introduced Compazine as an anti-nausea combined with Benadryl. The Compazine is the drug which caused Karen's tongue to go nuts [LINK]. The Benadryl will act as an instant antidote and we will be watchful for a recurrance.

Needless to say, Karen is sleeping soundly after a very long day.