More Information Gathering

David and I have done a lot since my last post. The last post was on November 30th. Here's what has been happening since then:

On Tuesday December 3rd we met with Emily Bergsland at UCSF. They do things differently at UCSF. Though she is fairly senior there, she wasn't knowledgeable about any clinical trials at UCSF. She said she would refer me to the Clinical Trial group to discuss any available options. Other than that, she said that if I was her patient she would likely try to put me on the first chemo I was on when this all began. That was the cocktail called "FOLFOX" and contained the drug Oxaliplatin which caused the cold sensitivity in my hands and throat. Or she said that it might be worth trying Regorafenib, which is a drug for metastatic colon cancer. I've been told by some oncologists that they don't like to use it because the side effects are pretty harsh (hand-foot syndrome and fatigue) but the average time it extends a patient's life is about 6 weeks which doesn't make it seem worth it. But she said that some patients respond very well to it and it's worth a try.

On Thursday December 5th, David and I went to Stanford to speak with their Radiation Oncologist. He is the person who would be able to perform a possible CyberKnife procedure. We got confused and thought this was our Interventional Radiologist appointment but when we got there we realized that we were meeting with a Radiation Oncologist. We had already met with a RO at El Camino Hospital so this turned out to be an accidental 2nd opinion. He said he wouldn't bother CyberKnifing the spot on the psoas muscle near my left kidney. They all say that little tumor is so miniscule and it's not likely to do any harm for a long time. It would have to grow much larger. Since it's not causing any problems now, leaving it alone for now would be a reasonable choice. The RO at El Camino did say that if I did any local treatments in the liver to reduce the tumors there then it would make sense to do something with this one as well. But it doesn't make sense to do this and not the liver. Also, leaving it in place might give us something to keep an eye on, like a marker to see how chemotherapy drugs are working, or not working. The overall opinion of the RO at Stanford was to leave it and not do CyberKnife at this time. The RO at El Camino said he would go either way. If I want to remove it then I can. If I want to leave it then it's an option too. I would lean towards removing it unless my oncologist sees a value in leaving it as a marker.

On Friday December 6th, David and I returned to UCSF to meet with the clinical trial people. He said there are two possible trial options for me. One trial is studying the efficacy of a drug I've already had (Lisinopril) "wrapped in a soap bubble". They believe the Lisinopril delivered this way can penetrate the tumor cells more effectively. The other trial involves two oral drugs. These two drugs would block activity on two pathways that the tumor cells use to grow and multiply. The thing about this set of drugs is that they would target pathways that haven't been targeted in me before, so my body, or the tumor cells, haven't set up resistance to them. The doctor said that there will likely only be a few slots available and he won't know how many until next week. It sounded like there wouldn't be much of a chance for me, but time will tell. To be honest, I'm not interested in the first study. I would possibly be interested in the second study. I could try it and if it doesn't work, drop out and do other things that are always available to me - to be described next.

Yesterday (Thursday December 12th) David and I returned to Stanford to speak with an Interventional Radiologist. If I were to choose radioembolization, chemoembolization, or ablation (cryo or radio frequency) then this would be his job. He explained all of these procedures and discussed the pros and cons of each. There are videos of him explaining these on YouTube. If you are interested, they are here:

• Radioembolization
• Chemoembolization
• Ablative Therapies

Actually he is in the first video. The other two videos are different people but he would be able to do any of the procedures. As an aside: He (Dr. Sze) is the senior doctor in his practice.

Dr. Sze told me that since the liver has already had some radiation from the previous CyberKnife procedures this might not be an option for me. Once the liver receives a certain level of radiation it starts to die. And it has memory. All radiation counts, even past doses. He actually said that the parts of my liver that received the CyberKnife are probably dead because that radiation was higher than the limit the liver can tolerate. He also said that a couple of the tumors are on the edge of my liver, making radioembolization dangerous for the other organs nearby which are very sensitive to radiation. Finally he said that my tumors are very small and may not be so greedy and "suck up" all of the radioactive beads so much, meaning the beads would also go to healthy tissue. He feels that giving me this treatment might cause liver failure.

Ablation therapies might work but would not be his first choice.

Chemoembolization would be his first choice. He said chemoembolization isn't a one-stop shop, that you have to do it several times. He has performed this up to 20 times on a patient without loss of liver function. It's designed to reduce the tumors that are present but won't stop new ones from popping up. So, it is to be repeated 3-9 months again to take care of new growth. He said that he would use Irinotican-saturated beads again since they did show effectiveness the first time I did this, last spring.

On Tuesday the 17th I should know if there is a potential slot for me with the oral targeted drug trial. I have an appointment to see my oncologist on that same day, at 4:30. I will take all of this information to him and he can help me decide which pieces of the puzzle are the best choice for me. The pathways I see are:

1. Do the clinical trial and nothing else for now. They wouldn't want any other therapies to be done because the point of the trial is to see if the drugs are effective against the tumor. If I embolize or ablate them then they have nothing to watch.
2. Do the chemoembolization followed by systemic chemotherapy, of my oncologist's choice. The CyberKnife of the psoas muscle tumor would be discussed with him, and could also be done further down the road.
3. If I get on the clinical trial and don't see any effectiveness then I could always stop it and do pathway number 2 at any time.

I did request an appointment at MD Anderson but their communication has been so poor that we are giving up on them. On Friday November 22nd I got this note from the person assigned to collect all of my records and make an appointment:

"Hello Mrs. Coleman.  We received additional records on 11/20/2013.  Your case is currently still in review. I will contact you early next week once your review is complete and we have established an appointment for you."

That was the last communication I received. "Early next week" came and went already - he sent me that note three weeks ago today. He has ignored two emails and a voice mail message from me since then. Yesterday I called to complain to someone and she said she would be talking to either his or her own supervisor. He actually hasn't entered any notes into my file since November 19th, she said. He is supposed to document everything but it looks like I don't exist to him anymore. I don't actually think we will end up going there but we will see what, if anything, they come back with. I am due to take a trip to Texas so maybe I'll go to see what they have to say if I don't get into the UCSF clinical trial.

The Vague Plan

I know that some of you have been itching for an update. Each day I thought about posting one but there have been so many possible permutations of the possibilities, I didn't want to try to put it down until some of it had come together more solidly. And the plan that we have isn't even nailed down. This is just our current version of the plan.

David and I have visited with an oncologist at UC Davis (Dr. Semrad) and also one at Stanford (Dr. Fisher). We saw both of these people on Monday November 25th. The oncologist at UC Davis was very nice. He mostly does research now but has clinic hours on Monday. He went through all of the treatment options for us and talked about clinical trials a little. He didn't have anything for me, really, in that aspect. He did say that if Stanford is doing an immune therapy trial to try to get on it. We asked Dr. Fisher at Stanford about that later the same day and he said that there has been an immune therapy trial but it has stopped for now. It may start back up though. I asked him to keep me informed. While talking with Dr. Fisher we decided that a multi-targeted approach is what we should go for, and my oncologist, Dr. Dormady, agrees. This would involve doing a procedure called "radioembolization" which is similar to the chemoembolization that I have alredy had but uses radioactive microspheres instead of chemotherapy drugs. Follow the link for more information. These doctors have told me that that the 4 tumors in my liver (and the one near my left kidney) are just the tip of the iceberg and there are likely more that just aren't visible yet on the scans. Hopefully radioembolization would take care of the visible ones as well as the invisible ones.

To deal with the one near my left kidney (in the muscle there), Cyberknife would be a good approach. (Remember Charlie?)

After those two procedures, systemic chemotherapy would again be on the menu. My tumor cells have demonstrated that they have developed a resistance to the drugs I've already been given so Dr. Dormady is trying to get insurance to approve a drug called Pemetrexed. This is actually a lung cancer drug but an assay called "Target Now" has indicated that it might be effective. Also there is a drug being used in Canada that is very similar to this drug and it has been shown to be effective against colon cancer. We should find out this week if the insurance will authorize this drug.

On Tuesday this week we will go to UCSF to speak with an oncologist there to find out if there is anything else we should consider and also to see if they have any clinical trials.

On Thursday this week we will return to Stanford and speak with an interventional radiologist and find out for sure if the radioembolization is a good option for me.

The following week we will meet with my oncologist again to put all of this information together into a final plan. Well, final until a clinical trial pops up.

Expert Medical Opinion

In the last post I clumsily referred to a "Critical Case Advanced Medical program" at David's work. Well, David found the brochure and it's actually called "Expert Medical Opinion".  I could paraphrase what it's all about but then decided it's easier to scan it and share it with you as images. Click on them to make them easier to read.

I see where I got the "Advanced Medical" from - it's administered by Advance Medical.

David posted a comment (below) to this but I wanted to add it to the body of the post:

"The basic idea is that they are off gathering all of Laurie's medical history related to Colon Cancer. After gathering the scans, treatment, surgical and other information the Doctor will assemble it into a report that goes to a panel of experts. Those experts then provide us with ideas, contacts and assist us with moving on to meet with people that might be able to assist us. A lot of it is what we've been doing on our own or with Dr Dormady, but I hope has a lot broader insight and vision into what is going on around the US and the world. It can take a month to get a preliminary report from them. I was pretty psyched when the doctor called me less than 24 hours after I contacted Advanced Medical." -David

The Waiting Game

I am following my oncologist's suggestion to take a tour of the academic facilities in order to get some treatment ideas and to see if there might be a good clinical trial that would be right for me. So, I have plans to go see people at Stanford, UCSF, UC Davis, and MD Anderson in Houston. I have an appointment with Dr. Fisher at Stanford next week. The other three facilities won't even let me schedule an appointment until they get all of my records. Hopefully they are getting what they need. I actually have copies of all of my surgical notes, pathology reports, scan reports, scan images (CDs), and blood work. I don't have copies of recent clinical notes from my oncologist and chemotherapy flow sheets. In the case of MD Anderson, I have had to call or fax each facility and request records to be sent to them. The other facilities are making their own requests.

Next week we will see what Stanford has to say. I hope it won't take too long to get into the other places. My oncologist is prepared to try a lung cancer drug on me (suggested by the Target Now assay done a couple of years ago) but that will depend on insurance approval. Also I may not want to start a new treatment just yet in case a clinical trial needs me to be currently treatment-free in order to enroll. I'll let him make that call. My appointment with him is next week too.

David's work also has a Critical Case Advanced Medical program where someone collects all of my medical data and finds expert medical opinions from across the country. So, we will also have some input from that soon.

So, that's what's going on. Not much of anything, really. This kind of thing takes time and the upcoming holidays aren't going to help matters much.

My CEA has been bouncing around a bit. It was 10.2 on October 11, 67.9 on October 28, 39.3 on November 13, and 45.6 on November 18.

I'm still feeling fine. My energy is good, my hair is growing, my cheeks are still rosy. :-)

PET and MRI Results November 2013

Well, the new news isn't so good.

I'll start with the CEA. Previously, the highest my CEA has ever been was 21.7. On Monday October 28th my CEA was 67.9. So we knew something was going on. I didn't want to put it out there until I had my scans done, which are now complete. The scans were a PET scan and an MRI. The PET scan looks all over for suspicious tumor activity. The MRI provides a more detailed look at the liver since that's where we've been seeing all of the activity lately.

Originally the PET scan said that there were three or two or three spots in the liver. Once the MRI was done they were able to see that there are four spots in the liver and one spot outside of the liver in muscle near the left kidney.

That last one means that a liver transplant is clearly off the table, if it ever was on the table at all.

My last chemotherapy infusion was September 30th. These 5 spots did not all grow within the last three weeks so it's clear that they started to pop up even while on chemotherapy, meaning they have developed a resistance to the drugs I was taking.

Dr. Dormady has decided that I should go on a tour of Stanford and UCSF (and maybe even MD Anderson in Texas and Sloan-Kettering in New York) to see if there are any clinical trials that I might take part in, or to get treatment ideas. My appointment with the oncologist at Stanford is November 25. I don't know when I'll see the doctor at UCSF. These two teams may rub elbows with the people in New York or Texas and may know of trials that are going on there. We have been advised that in order to find out, we may have to fly there and meet with the teams in person.

Here are the reports if you would like to read the medical jargon:

MRI Page 1

MRI Page 2

PET Page 1

PET Page 2

PET Page 3

PET Page 4

You may wonder how I'm doing. Well, I'm doing as well as I always do. I feel fine. I have no pain, my energy is high, my cheeks are rosy. I don't want to go on chemo again but maybe I can squeeze some more time out of life by doing so. I will see the doctors and do what they recommend, as always. So far they have managed to keep me kicking. So, while I'm disappointed, I'm not sad; I'm determined.

 I will keep going and enjoy David and the dogs. :-)

Normal Life

For a few weeks, at least, I'll get to remember what a normal life feels like.

Last week David and I met with the oncologist and with the liver transplant doctor at Stanford. My oncologist is still supportive of me getting a new and improved liver if that's what I decide to do. I think that overall he thinks it's a good idea. We talked about some upcoming treatment options, such as what drugs to put me on for maintenance. He's big on maintenance chemotherapy. I reminded him that I need a few weeks off in order to attend to other issues that have been on hold for a while, like my right foot (pinched nerve) and my gums. He agreed but I don't know how long I can hold him off.

Two days later we met with the liver doctor. He explained to me that years ago it was tried many times to cure people in my situation, but pretty much all of them ended up with more tumors in the liver or the lungs, mostly. He said that the anti-rejection drugs that a patient has to take when undergoing a transplant causes the immune system to be weaker so any cancer cells that are still around can rev up and grow quickly. So this may not be the best solution. He did tell me that there is a pilot study underway in Norway for liver transplants for patients with colon cancer mets to the liver. I have read the report for the study and have found it very interesting. He is friends with one of the doctors performing the study and said that he would contact him to find out more information. But if the transplant causes a situation in my body where more tumors grow, and then I have to battle those tumors in addition to dealing with the anti-rejection drugs, this may not be the best option for me. Maybe it's a last-resort type thing.

I have done a lot of reading and have even consulted with a nutritionist who specializes in cancer-fighting diets. Based on her recommendations, and my own research, I have decided to try taking C3 Curcumin Complex by Designs for Health. There's more information about that here: Curcumin. Curcumin is very effective at reducing systemic inflammation that cancer cells thrive on. I've also decided to try the "My Community Host Defense" supplement. Info for that is here: Host Defense. That supplement is for building up the immune system and if I can help my immune system fight cancer cells I'll do it. It's worth a try.

Last One!

Well, I did it. I endured 12 rounds of aggressive chemotherapy accompanied by a not-so-nice liver chemoembolization along the way. A cure isn't expected, but it certainly isn't if we don't try.

This round wasn't so bad. I was able to get plenty of rest before going in for the infusion and also I was able to sleep through the infusion.

Before I go into the details, I'd like to first thank my cousin Nadine for visiting over the weekend. I loved spending time with her and wish we could do it more.And I can't wait to wear the awesome clothes I got while we were out shopping!

OK, back to this week. One thing I did differently this time (better late than never) is I sipped on smoothie after smoothie. Having the extra fluids and the extra nutrition from the smoothies helped a lot. Sure, I still felt fatigued but it wasn't as intense. I also didn't throw up at all.

I am experiencing sensitivity in my hands, so much that holding a knife and fork is uncomfortable. I tried to eat a breakfast burrito this morning (it didn't taste very good as it turned out) but cutting it was painful. So, David lovingly cut it up into bite-sized pieces for me. I expect this sensitivity to persist for a few days and then it will subside. I will hold onto ice packs a lot to help the inflammation go away.

Speaking of inflammation, last time and this time the hair follicles on my head have been very tender. Of course I'm afraid that my hair might fall out again. So I'm spending a lot of time with an ice pack on my head until the tenderness goes away. If it cools down the follicle inflammation, perhaps the follicle will hold onto the hair shaft. It's worth a try.

On Monday I didn't actually see the oncologist (I saw his assistant instead) so I didn't get to discuss our next plans. I do know I'll get a nice break while keeping an eye on the CEA. I will meet with the oncologist in a couple of weeks and will have more to say about that then.

Just an update

OK, OK, I know I promised to elaborate on my bad day on Facebook. I'll try to make some sense now...

So, my last chemo round was on Monday September 16th. Well, the story really starts the night before. David and I went to bed our usual time and just after we got to sleep, one of our smoke alarms chirped due to a low battery. We have 8 alarms in this house so it's frustrating trying to figure out which one chirped. What was even more frustrating is that David spent Sunday changing all of the batteries so this one should have had a fresh battery too, but I guess it was bad out of the box.

Anyway, David pulled the alarm down, pulled the battery, and came back to bed.

Then, after we got back to sleep, we were again woken up by what sounded like a very loud, very close gun shot.

I have found that in order for me to have a somewhat decent chemo day is that I have to be well-rested before I go in. So, with all of this activity I didn't get enough sleep.

Monday morning I got up and took my Emend, an anti-nausea drug. But as soon as I looked at it and touched the box, my stomach started turning. I started gagging. I downed the pill, went down for breakfast, and then took the rest of my pills, including two ginger capsules. The ginger helps with nausea too. Shortly after taking my pills, my stomach churned and I threw up in the bathroom sink. There were my ginger pills. But I had enough of swallowing pills so I didn't take fresh ones.

I went to the infusion center already feeling sick, and it was just because now my brain and stomach knows what it means to take these pills. One way I deal with the 4-5 hours that I'm there is I ask them to give me Lorazepam in my IV as soon as I get there so that I can sleep through it. They give me the end space to try to put me in the quietest spot. That's "Chair 1". Well, that day Chair 2 and Chair 3 had new patients in them. Chair 3 was someone from Russia or someplace where the men have booming voices and the whole family comes. So, there was a loud party two chairs away from me the whole time. Then, because they were so loud, the nurse had to talk loud in the space next to me, Chair 2. When a patient is new, they have to have a lot explained to them, so I was kept awake by the party two chairs down and because of the resulting loud explanations next to me. The result of this? Before I left, while I was still hooked up, I threw up.

That wasn't the end of it. I threw up twice more at home before bedtime. Once was when I got out of bed to go downstairs for a bite to eat (I had an apple). I used the bathroom first and just as I stood up, up it came on the floor. I didn't even have time to turn around. Then, later when I got up in the living room to go to bed, luckily I was passing by the kitchen sink. My stomach churned, I coughed (it usually starts with coughing and gagging) and then up came the apple.

I just went to bed and hoped for a better day the next day. Lorazepam helped.

Since then I've still been very fatigued. I haven't recovered my full energy. I hope to rest up the next couple of days because my cousin Nadine is visiting this weekend and I want to enjoy every minute with her. I will enjoy every minute, but I want to be fully present. I usually feel great by that second weekend so I'm not too worried. I'll get some rest this week.

I only have one more treatment to go, and then I get a nice break!! I don't know what the plan is but I'll post it when I find out. Well, I will find out on Monday but I'll be too foggy for a few days to write up one of these. Maybe I can get David to do an update for me. I'll ask nicely.

Salsa

One thing that I miss the most right now is salsa. The kind you eat, not the dance!! Anyone who knows me well probably knows that I love spicy foods. But the chemo has made my mouth really sensitive to spicy foods. I'm not just talking about my tongue. It's also all of the insides of my cheeks, my gums, and the roof of my mouth.

I can't wait for a few weeks when my mouth tissues can recover and I can start eating salsa again!

Hair Stuff

My goodness, one positive thing that I can take away from losing half my hair, wearing wigs, and then having it grow back is this: People really like the new look. This isn't even a real hairstyle. It's a stop-gap to try to blend the longer stuff that didn't fall out with the shorter stuff coming in. In a couple of weeks I'll go back in and have him do more blending; maybe then all of my hair will match. Anyway, it's super easy to take care of and people I know plus total strangers tell me how they love my hair. And often that's followed by "Not everyone can pull it off." I heard that yesterday from a complete stranger, someone who did not know my "old look".

So, I wouldn't have ever tried such a short style on my own but I had to, courtesy of chemotherapy. And I find that maybe it's the style for me. After all, people never gave candid positive responses to my old hair.

I may not keep it quite so short (especially in the back) but I'll leave it to my hairstylist to make my new look work the best for me.

Here are some pictures from just a few minutes ago:

Please realize that I'm not at all bothered by this hair stuff. I wash it, dry it, and go about my day. I just wanted to post this because it's an observation that I have made.

CEA - Going the Right Direction

Whew!!

Three weeks ago when I got my clear scans, my CEA jumped up which was very confusing. It had jumped from 6.5 on August 5th to 21.7 on August 16th. I even called the lab (I used to work there) and asked them to re-run the sample and the repeat was the same. This was very baffling since my scans were clear.

When I went in for the infusion  on August 19th the doctor had a new sample drawn and tested. This CEA was 18.3 which was a small improvement.

I had new blood work done last Friday (August 30th) and the CEA has dropped to 10.5 which is much better. I fully expect to see it drop further in two weeks.

I have another infusion tomorrow (booo!) but after that I only have two more. These next three will affect me for a total of five weeks from now. I can handle five more weeks. After that I expect to be given a break so that I can attend to a couple of other medical conditions while off of the chemotherapy drugs. One of the drugs (Xaltrap) can cause bleeding and also slows down healing and the two procedures I need will include a bit of scalpel work. They are minor procedures but will improve function and all over comfort and health.

What are these procedures you ask?? Well, if you must know, I have a pinched nerve in my right foot which gives me a lot of grief. I'd like to go in and un-pinch it. Also the chemotherapy has caused gum recession. I've consulted a periodontist and he can do gum grafts to correct this but we need to wait until I'm on a chemo break. This procedure is minor and will take just a week or two to heal fully. I don't expect the foot thing to take very long to heal either since it doesn't involve any bone healing. Then I can enjoy long walks, runs, and hikes again.

....And it's now declining .....

If you're reading these in the correct order then you'll be glad to hear that Laurie's CEA was down to 18.1 today.  If you're reading these in the wrong order (latest post first) then you're probably going "its what!?!?!!?".  Oh, and if you're wondering why this doesn't seem like Laurie, well that's because it's not.  David here doing a little chemo induced blogging.  Laurie's chemo, not mine.  She's sleeping upstairs as she normally does the week of a chemo treatment.

Anyway....

So we met with Doctor Dormady and he had the same reaction we had.  It doesn't make sense although there are explanations for what could be going on.  He had another CEA run with a fresh blood draw this morning.  The CEA came in at 18.1, which is 3 points lower than Friday.  Doctor Dormady was pleased to see that and there is a hypothesis for what is going on.  The current supposition is that we have just seen a burst of CEA produced by a "last gasp" of a tumor.  As the tumors break down they give off CEA, much as they do as they grow.  Doctor Dormady believes that after the last treatment there must have been a spike as a tumor went where tumors should go (away!).  We will keep an eye on things as always, but the expectation is that the CEA level will continue to decline and we'll have an even better number in 2 weeks. Doctor Dormady is also going to have the radiologist that did a couple of Laurie's procedures take a look at the scans to ensure that nothing was missed.  We don't expect anything, but we like to be safe and we trust Doctor Komlos.

That's the update from the non-chemo brain of mine.

MRI from 8/15/2013 and CEA Consternation

I'm sorry I didn't get this posted sooner!! I picked up the report on Friday and never stopped doing stuff since then until now. This is by far the busiest weekend we've had so far. The MRI shows everything normal, as it all should be. That's good news.

The reason I'm not jumping up and down with joy is my CEA makes no sense. It's been hanging out around 6-8 since May. The one I had done this past Friday is 21.7 which does not correlate at all with the three clear scans that were just done. I know the people at the lab since I used to work there so I called them up and asked them to re-run the sample. The result was the same. I predict that Dr. Dormady will be confused too but will just say that we will see what the next one is. This test is done every two weeks. So, we will see what it does the next time.

For those of you who like to read medical reports here is the MRI report. If you click on it then it should pop up full size to make it easier to read.

PET Scan and CT Scan from August 7th

Well, as most of you who are on Facebook probably already know, I got my PET scan and CT scan results yesterday. I scanned in the reports for you to see but here's the summary: The scans showed two liver lesions that have no metabolic activity, suggesting that they are likely dead tumors. They are probably the ones we CyberKnifed at the end of last year. It looks like I have a small ventral hernia which is causing no problems. I have no idea how I got that, but I'll trade a small hernia for a tumor any day. The PET scan did see new metabolic activity within my T3 vertebrae. But there's nothing seen on the CT scan to indicate anything suspicious there. They recommend an MRI of that area to double check but the doc doesn't expect it to amount to anything and if it does, it would be easily dealt with using the CyberKnife. I will have that MRI this coming week.

If the MRI rules out cancer activity in my spine then the doctor said he would consider me to be in remission again.

He would like to have me complete the chemotherapy. Usually, they administer 12 rounds and I've done 8 so that means 4 more rounds just as a precautionary measure.

Here are the reports:

Hair Stuff

My own hair is all coming back in now. About 50% of it came out so now about 50% of the hair on my head is the new growth. I paid a visit to my hairstylist so that he could help blend (as much as he can) the old longer stuff with the new soft, fuzzy stuff. He did what he could. Here it is:

 

I see this as an opportunity to try out new hairstyles as the length changes.

When I bought my wigs a few months ago, the woman selling the wigs said something that I thought was odd. She said, quietly, "Now, to be honest, isn't the hardest part off all this (the cancer and treatments) losing your hair?" No, for me is isn't. The fatigue, nose bleeds, etc. have all been much harder. Wearing the wigs was fun and I had a great reason to try new instant looks. And sure, I'd rather not have to grow it all back from scratch, but I'll do what I can with it and try to have some fun along the way. Maybe I'll find a great hairstyle that I never would have thought of before.

Treatment news: I should have a couple of scans this week and will see the doc again on Friday. I'll also have my CEA tested tomorrow. This will be a news- and decision-filled week.

8th Round and Lingual Tonsillitis

Whew, this 8th round was a bear. I didn't have a lot of nausea but was very fatigued. I'm still not recovered but I'm trying to rally.

I did manage to avoid most of a rising episode of Hand-Foot Syndrome. After the 4th round I had a pretty harsh case of this. It's cumulative in nature, so this being the 4th round of this cycle of four treatments, I could feel the effects coming on. As soon as that happened I clutched ice packs for three or four days to try to prevent it, and I was successful. To learn more about this condition, this is a good website: Hand-Foot Syndrome

On top of the chemo and the recovery from that, my throat has been bothering me for over a week now. Usually the week after each infusion. my throat gets sore and raspy. It usually clears up by the next round. However, after round 7 my throat kept getting more painful every day. Finally I got squeezed in to see our ENT doctor. He told me I have lingual tonsillitis. I didn't know that we have tonsils at the base of the tongue, out of sight. Anyway, they are infected. He took a culture, prescribed some antibiotics, and told me to gargle with salt water pretty much continuously. He should have the culture result on Monday (tomorrow) and will adjust the antibiotic if needed.

So far today I feel no improvement, I'm still eating soft foods. I've lost a few pounds. I can't wait until I can eat pizza again.

On the upside, I don't know when round 9 will be. I will get to take a break and let some nagging issues heal (sore gums, nose bleeds, etc) while I get a couple of scans. We will then decide what weapon to use next. If there's just one lesion, I expect to be CyberKnifing it. If there are a bunch of small ones I expect to do radio-embolization. Whatever we decide to do, I'll post it here and explain it in further detail at that time. At this moment I still don't have the scans on the schedule. I suspect the oncologist is in a boxing ring with the insurance company. Once he prevails with authorization for the scans I'll get a call to schedule them.

I've added a few new features to this blog. Over on the right you will see options to subscribe to new posts by email, subscribe to posts or comments via feed readers, and also a place where you can send me a private message via a contact form.

7th Round Finished and Catalina Island

Hello all,

It's been three weeks since I posted because I took an extra week off between treatments. We spent a nice long weekend on Catalina Island and the doc allowed me to push the 7th round off a week so that I'd be sure to have plenty of energy. And I did!

Here are a few pictures:

This cute little guy joined us for the weekend

David and me enjoying a nice dinner with a great view.

Sea Lions

David and me on a bus tour.

Catalina Bison

This is Pimu. She and the other Bald Eagles were the reason for the trip.

Meet "Echo", otherwise known as K-38.

Echo (K-38) is a recent Bald Eagle fledgeling. Many people came just to see her.

Those last two pictures were taken though a spotting scope using my regular camera. Not too bad considering how far away we were.

Now, onto the reason for this blog. Well, one reason for filling this post with pictures of our trip is because it's just more interesting. This round was a lot like the last one. The doc didn't have anything more to say. The plan is still to do one more round, then do TWO scans (a CT scan and a PET scan) in order to get the most information. Then we will decide what to do next. Do we CyberKnife? Do we do another embolization but with radioactive beads rather than chemotherapy-saturated beads? Do we approach a liver transplant surgeon for an opinion? The scans will determine the path.

My CEA this last time was 7.1. The time before it was 6.9. So, it's about the same. I would like to have seen a downward budge, but I'm certain that if we take more aggressive measures (one of the three in the last paragraph) it will plummet.

I'll keep you guys posted. In the meantime, I'll post more Catalina Island pictures on Facebook once we have a chance to go through them.

6th Round is Complete

Well, last week I did round 6. The doc will have me do 8 or 12 rounds, so I'm at least halfway there. I am taking an extra week in between treatments this time so that I can have full energy for my upcoming weekend trip. That will put round 7 on Tuesday July 9th. I will have my blood work done (including the CEA) on Thursday July 4th.

This last round wasn't fun, like all of them. I think I only threw up once, though. :-) But finding stuff that I could eat was hard, and I kept David running to the store. He even made me some homemade chicken and pasta soup, but then I found out that the pasta and the chicken weren't settling well on my stomach, but the broth and the vegetables in the soup were very good. Next time I guess he can make it simple and just do a vegetable soup. I also thought I could eat some carrot and raisin salad. He was nice enough to make some for me, but I found it was just too flavorful so I couldn't eat it. I did find that one of my cravings was a winner: pretzel sticks. Those did not cause me any problems. I guess I *could* live on pretzel sticks for a few days. Last Thursday (3 days post-infusion) I was way too tired to drive and David was away at an appointment. I REALLY wanted some guacamole. I put an SOS out on Facebook and soon some guacamole was delivered by our friend and dog walker, Rochelle. What a sweetie!

By 3-4 days after an infusion I can usually start to to eat somewhat normally, just with smaller portions.

I haven't seen any more accelerated hair loss with these last two rounds. I saw a lot come out during the first 4 rounds and then a bunch came out after my liver procedure. But it seems to have slowed down to a normal loss rate. As I continue the treatments it may accelerate again, but only time will tell.

Having the 2-month break from the chemo did allow some of my side effects to go away completely. They will return (they are already beginning to) but since I was able to experience the healing and recovery, it'll be easier to get through the rest of the chemo knowing that I will return to normal afterwards. One of the side effects that are most troublesome (besides hair loss) is tenderness in my gums, with some recession caused by the chemo. The recession cannot be reversed but the discomfort at least will go away. Also, the Zaltrap causes ulcerations inside my nose accompanied by nose bleeds, and a general discomfort when I breathe through my nose. This also healed up during the break but has resumed. At least I know that it's not permanent. Well, unless the doc intends to keep my on Zaltrap for maintenance chemo like before. :-(

I'd love to reach a stage where I no longer need maintenance chemo. Which is why the idea of getting a new-and-improved liver isn't so bad, if it can lead to a cure.

5th Round Completed, Wigs... and Possible Future Transplant?

Hello all. I'm happy to report that I've made it through my 5th round of Folfiri + Zaltrap. To summarize, I endured 4 rounds of chemotherapy from February 11 - March 25. The side effects were intense and more activity was present in my liver so it seemed like a good time to take a break from the systemic treatments and take the battle straight to the liver. So we halted the treatments and did a chemoembolization on my liver, using Irinotecan-saturated beads. My CEA has dropped and hopefully the activity in my liver will stop or slow down. This past Monday (June 3rd) I resumed the chemotherapy. As always, it wasn't fun. I was fatigued. I had no appetite. Even though I can't say that I had a lot of nausea, my stomach was smoldering all the time. That's the best way to explain it. It's like it was threatening to erupt and if I ate or drank the wrong thing it would then do so. I did throw up some on Monday and Tuesday. On Wednesday I returned to the cancer center to remove the 46-hour infusion pump. After that I started to feel better. And more good news: I didn't have any sign of the hand-foot syndrome that had bothered me the last time. I think that is due to the nice break that I had from systemic treatment which allowed some of the residual stuff to be cleared from my system.

During the four previous rounds of chemo I definitely noticed that my hair was shedding at an increased rate. After the embolization it revved up and now I probably have about half as much (or possibly less) hair than I usually do. So, I've taken the opportunity to take advantage of my insurance company's benefit of purchasing wigs and I now have a nice selection of different lengths and styles to choose from. I have to say, I'm a bit jealous that these actually look better than my own hair. They are very natural looking, the hair is sleek and shiny, but not plasticy. The other day I was at a Chinese restaurant and the hostess was staring at my hair. Then as she took me to my table she said, "I like your hair!" I simply told her thank you. When my hair grows back it may be difficult to revert back to my own fine head of hair after getting used to these full styles that actually take no styling.

Those of you on Facebook have seen these pictures but I will put them here too for those who are social media phobic. :-)

This one has bangs and a flip-out back:

This one has no bangs and a wedge back:

This one is long with no bangs:

And, for when I just want to be colorful!

I actually have a couple of scarves like this; both are very pretty.

OK, back to the medical stuff: I actually have broached the topic of a liver transplant to my doctor. For the last two years, any activity has only been in the liver. So I asked him if, after some length of time, no activity is seen elsewhere could the medical professionals make an assumption that all of the cancer cells have been eradicated from everywhere except the liver . What would that time be? Two years? Five years? Is there a time? He thought about it and said he knows of no precedent for a colon cancer case that has moved to the liver getting a transplant but he has heard of patients with cancers that have moved to the lungs (but did not originate there) that get a lung transplant when there is no longer additional activity outside of the lungs. So, there's not an automatic "No" to the possibility of a liver transplant. For that, it would take the involvement of a liver transplant surgeon to make the determination. And I have no idea what they would say. I asked him this recently and when I've mentioned it to a couple of friends, at different times, I was astonished to hear them say, with no hesitation whatsoever, that they would gladly donate some of their liver to me. Wow, talk about feeling loved! It never, ever occurred to me to even think about asking my friends and family for a donation. I assumed I would have to be accepted by the transplant waiting list, if I was even considered a candidate. However, if, and when, my doctors feel like it's time to consider replacing my beat-up liver with a new and improved one then I think it would move things along faster if a volunteer donor happened to be a good match, and if my insurance company approved the transplant. This is on the back burner, but it has given me some ideas. And though I wouldn't know know how to ask (how does one ask someone for some spare liver?) I would probably find a way to also ask my sister in addition to the friends who have offered. I don't know how likely anyone would be to be a match, but my sister might be the closest. She is such a kind, loving person and, knowing her, she would want me to allow her to make that choice rather than for me to make it for her by not asking.

(Ironically, when I had a liver resection in 2009, the piece that was removed was the section that they usually take for donations.)

All this said, it's just a glimmer. My liver isn't finished with this fight and a plan like this, if it ever comes to be, isn't imminent. But it's just one more potential weapon in our arsenal. It's kind of nice to think that perhaps I have corralled all of the cancer cells in my liver, and then I can potentially take it out and throw them all away, keeping the rest of me safe.