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Mom was approved for the SIR-Spheres!!  We haven’t heard yet when the procedure will be but I will let you know as soon as we do.  We know Mom will have 3 procedures, each spaced about 4 weeks apart.  They will first treat the left lobe of the liver and she will stay overnight under observation to assure the radioactive beads didn’t leak to any part of the body other than the liver or burn through the liver and damage her stomach.  Then if all goes well then she will go home and have 4 weeks off (no chemo either) while the radioactive beads do their work.  She can go on the truck with Jay during this time but no kids or pets are allowed on her lap.  Then she returns in 4 weeks to have the right lobe treated.  The third treatment will be applied to the entire liver.

The waiting for the results will be the hardest part.  The tumors and liver are inflamed from the treatment so the scans are inconclusive for several months.  It can actually appear as though the cancer is progressing because of the inflammation.  So we will have to wait several months to truly know the results and efficacy of the treatment.  This is very scary because Mom won’t be receiving any other types of treatments during this time.  We are relying upon the beads to keep the cancer at bay and hopefully significantly shrink them.  Also, the chemo is the best defense against metastasis of the cancer to other areas of the body.  Only time will tell but we are very optimistic and the tumors have already been shrinking with the chemo so we just have to think positively!

I hope she receives the beads soon.

Mom is getting the shunt study done as we speak!  We should know within a couple hours whether she is approved to get the SIR-Sphere procedure or if they decided to do the chemo-embolization instead.  Ideally, we want her to be approved for the SIR-Spheres.  If she is then she will get to come home today while the radioactive beads are ordered and the procedure is scheduled for the near future.  If she isn’t approved because her arteries are too constricted then they  are planning to perform the chemo-embolization today!  That means they will cut off the blood supply to Mom’s liver and put chemotherapy directly into the liver through her femeral artery.  They said she will be very sick for around 5 days, puking her guts up and feeling lethargic.  Also, her liver will swell because it will be so inflamed from the chemotherapy.  But it is an aggressive treatment but we are still hoping for the SIR-Spheres instead.  They have much less severe side effects but may be even more aggressive against the tumors.  Grams and Uncle Greg are supposed to call me as soon as they hear from the doctors.  I’ll let you know as soon as I hear something.

The results of the PetScan were great!  The report states that the tumors all appear to have shrunken slightly.  One shrank from 2.0 c.m. to 1.7 c.m.!  This was great news since Mom has now been off of the Avastin for 2 1/2 months so we were nervous that the cancer would take the opportunity to grow.  But it didn’t!  We were so relieved.

Mom is still currently being considered as a candidate for the SIR-Spheres.  She meets with Dr. Schefter this week to discuss scheduling the pre-qualification procedures again.  Mom has gone through the procedures once before but the side effects of the Avastin disqualified her for the procedure (constricted arteries). 

I will let you know as soon as we get the results of the pre-tests for the SIR-Spheres.  I hope it goes as well as the PetScan!!!

Today is Mom’s 51st birthday.  Grams and Uncle Charlie took her to lunch at Joe’s Crab Shack.  She said she had a great day but she still didn’t get the day off from the hospital.

 She got the chemo pump off today and should get the results of the most recent PetScan tomorrow.  I’ll let you know after we get the results!

Things are going well in Colorado.  Mom is plugging through the chemo regimen and we should have another PetScan next week.  Then we should start having the tests to see if Mom’s arteries are cooperating to get the SIR-Spheres.  I am a little concerned because Mom went to see the internal medicine doctor today about her ‘period like’ symptoms she has been having.  They are going to run some additional tests in the next couple of weeks to see what is causing that.

 Uncle Charlie is also doing well and it looks like he will be keeping Mom company for at least the next 6 weeks but maybe up to 12 weeks.  His leg is doing well but he can’t put any weight on it for 3 more weeks.  He has a lot of staples!  He broke both bones at the ankle in addition to breaking the big bone just below the knee.  I’m not sure how many screws he got but they said they put a lot of metal in there including a steel rod.  Nice job Uncle Char!

Jay started his new job in Texas today.  He is now a company driver.  I hope he likes it and it works out for him.  He should be going through Denver on a regular basis and will be able to take his down time off in Denver to spend more time with Mom. 

I’ll let you know as soon as we get the results from the PetScan next week.

Uncle Charlie took a nasty fall today and broke his leg.  He just got out of surgery to repair it and got a lot of hardware.  So it looks like Mom will have some company at the house pretty soon!  I’m assuming he won’t be able to drive a truck for at least a few weeks while on medication and in a cast.  They are going to keep him in the hospital overnight but the surgery went well.  I’ll post more after I see him for the 4th of July weekend.

We met with Dr. Kane on Tuesday, June 17th.  Mom’s numbers looked pretty good and it was good news all around.  We have been worried because her legs keep swelling up but Dr. Kane said her liver function is holding steady and her kidney function is excellent so the swelling must be due to the Neulasta shots and Lyrica.  She will have another PETScan at the end of July and they will start restesting her for the SIR-Spheres in early August.  So send us good thoughts for the test!  She’s holding her own against the cancer which is great!  She is still receiving the Neulasta shots to keep up her platelet count which means she has to go to the hospital once every day.  She is still off the Avastin since we are trying to prepare for the Sir-Spheres and is only receiving the Folfuri.

Mom is staying with Uncle Charlie now and it’s working out really well.  She’s using two rooms upstairs and painted her room light blue-green and say’s it’s very relaxing and she put in a garden in the back yard.  It’s nice for her to have a place so close to the hospital!  Thanks Uncle Char!

It looks like Mom is still being considered as a potential SIR-Spheres candidate.  YAAY!!  They are going to redo the shunt study in 3 months.  The thought is that the Avastin has affected her vasculature and that is what caused the constriction of her arteries which is what could potentially rule her out as a candidate.  So we have to wait 3 LONG months and hope that the next study shows her arteries have recovered from the effects of the Avastin and she can get the beads.  She will continue to receive the Folfuri chemotherapy during this time but no Avastin.  I’m very nervous about that but it will be more than worth the risk of her not getting the Avastin if she is able to receive the SIR-Spheres.  They have had such good results!   It causes me a lot of anxiety because I feel that with cancer you are in a constant race against time and always at that delicate balance between winning and losing against it. 

Mom had the shunt study done on Wednesday and it ruled her out as a candidate for the SIR-Spheres…….for now?  We were very disappointed but they suggested that they may test again in 3 months to see if there is a change in her arteries.  As of right now, her arteries are too small for the procedure.  We don’t really understand what would change the size of her arteries but Mom meets with Dr. Kane on Tuesday and we should have more information then.  Dr. Kane will also lay out what Mom’s treatment will be in the coming months.  I will let you know more after Tuesday.

 I didn’t explain the shunt study much so here is an explanation of what Mom underwent on Thursday (take from the SIR-Sphere support group, Y-90, website):

You will be prepped for the procedure and your interventional radiologist will make a tiny incision in your leg and carefully place a small but long, flexible plastic tube called a catheter into the femoral artery (which is the major blood vessel in the leg).  He/she will use an x-ray that allows him to view the inside of the body on the screen as he  guides the catheter through the blood vessels to the hepatic artery (which is one of two blood vessels that feed the liver). He will ease the tube into the branch of the hepatic artery that feeds the cancerous tumor(s) in your liver. This process will ensure that the microspheres are going to be distributed appropriately. It will also indicate whether or not they will be likely to go into areas that could be dangerous - such as the lung or abdominal cavity.   Sometimes blood flow will have to be redirected. You will be awake for the procedure and can even watch the monitors if you so choose. You may feel some pressure but should not feel pain.  Once the procedure is complete, the catheter will be carefully removed and pressure will be applied to the incision.  You will have to lie flat for several hours to ensure that bleeding does not occur.  If all goes well and Yttrium 90 Microspheres therapy is possible, then a date for the procedure will be set and you should be able to return home shortly after the evaluation.

Mom and Jay are on their way to Texas.  She sounded so excited!  She only gets about 5 days away from doctors appointments but it will still be great for her to see her house and pack up what she can.  They are coming to Houston first and we will get to spend a couple days with them before they head to Bandera.  She has to be back in Colorado by Tuesday.  And the shunt study is Thursday.  We’ll let you know how that study goes!

We met with Dr. Kane today and it sounded like the CT-Scan results we good.  So they gave the go-ahead to do the next study.  Mom will have the 2nd study, the shunt study, next Thursday.  This study will look to see how the plumbing of Mom’s arteries to and from her liver work and see if she has a “backwash” effect in any of them.  This could lead to the radiation being scattered and transported to other parts of her body which could be catastrophic.  If she has good plumbing and no backwash then she should be approved for the SIR-Spheres.  (Other than the insurance problem we have talked about before!)  This will be the final pre-qualification test for the SIR-Sphere procedure. 

Mom will be travelling to Texas this week with Jay to finish packing and moving from their house in Bandera.  They are trying to sell the house and move more permanently to Colorado to be closer to Mom’s doctors and hospital and to get out from under the burden of the additional house payment.  Jay will be trying to find a job there soon.  I will let you know how thier trip goes and the results of the shunt study ASAP!

Mom had her CT Scan today.  She is meeting with Dr. Kane Tuesday to discuss the results and we hope they are good and gives us the green light for the 2nd study we need for approval for the SIR-Spheres (the shunt study). 

We are still worried about getting insurance approval for the SIR-Sphere procedure.  The doctors mentioned SEVERAL times that we would not be able to get the procedure without insurance approval.  The high cost of the procedure is due to the large medical team required, the radioactive nature of the procedure and the radioactive beads themselves which are flown in all the way from Australia on a case by case basis.  However, Dr. Durham did say that the SIR-Spheres are becoming the “standard procedure” for metastatic colorectal cancer and is becoming widely accepted for this purpose by most insurance companies.  It is ALWAYS approved by Medicare for treatment for metastatic colorectal cancer.  It’s use for other types of cancers has not been accepted as readily so we are lucky in that respect.  To increase our chances of insurance approval, we are reading “Fight Your Health Insurer and Win, Secrets of the Insurance Warrior” by Laurie Todd.  It is a How To book on what to do if you are denied treatment due to a denial of coverage by your health insurer.  It covers who you need to contact in such a situation, how to format your letters, what to say, evidence/studies you need to provide etc.

Don’t get me wrong, Aetna has been very, very good to us thus far and we are optimistic that they will approve the SIR-Sheres procedure.  And maybe I’ve just seen to many Michael Moore documentaries!  Sicko REALLY freaked me out and made me very suspicious of health insurance companies.  However, we want to be as prepared as possible…… just in case! 

Mom starting seeing a primary care physician a couple of weeks ago.  We realized we were relying very heavily on Mom’s cancer doctors to treat every ailment or side-effects she was experiencing.  She has been taking oxycodone regularly since her diagnosis last year for varying pains that have changed throughout her treatment.  The most frequent pain was the tingling in her hands and feet from the neuropathy which is a common side effect of the chemo.  Her new primary care physician prescribed her Lyrica, which is a treatment for fibromyalgia (nerve pain).  It is REALLY helping with the neuropathy pain and she has been able to cut back substantially on her pain medications.  She is relieved because the neuropathy was causing her a lot of problems with writing or doing any tasks that required her to use her fingertips because it was very painful.  We wanted to let anyone that may be experiencing similar neuropathy know that Lyrica is a worthwhile option to try!

I haven’t posted recently so I have a lot to cover.  Since Mom pulled her catheter out she has received a Port Catheter.  We don’t like it as much as the Groshong catheter because it is quite painful when they insert the needle.   But it has less risk of infection because it consists of a disc that was surgically inserted under the skin.

 Mom’s CEA levels went up to 119 which is indicating that the cancer could be becoming resistant to the chemotherapy.  She is presently still receiving the Avastin with the 5-FU but after next week she will not be getting Avastin anymore for awhile.  Due to the hemophelia side-effects she has to stop taking it before she can have any surgical-type procedures.  She is hopefully going to be receiving SIRT therapy which I address below.  But I want to talk first about the drug she will be receiving in place of the Avastin first, Erbitux.  It does not have the hemophelia-type side effects of the Avastin and therefore is safe for use during surgical procedures.  However, it has some nasty side-effects of it’s own including a acne-like rash covering the face and chest.  Although, in clinical trials it only occured in 14% of patients.  Regardless, Mom is not exactly looking forward to starting this new therapy! 

 I was lucky enough to spend last week in Colorado and accompanied  Mom to several of her doctor’s appointments.   We met with 2 new doctors that are being added to Mom’s Cancer Team; Dr. Schefter and Dr. Durham whom are both at the University of Colorado Cancer Center.  Mom is presently being considered for Selective Internal Radiation Therapy (SIRT).  She will undergo 2 tests to see if she is a viable candidate and then we anxiously await insurance approval.  The SIRT procedure involves radioactive beads, Yttrium-90 microspheres, being introduced into the affected organ.  In her case, they will be injected into the liver through the femeral artery.  If introduced correctly, the side effects are minimal.  There is little pain and it’s less symptomatic than the chemo.  The beads will be given in 3 seperate instances over several months.  Initially, they will inject them into the right lobe of the liver, the second time they are injected into the left lobe and if all goes well then they will be inserted into the entire liver during the 3rd procedure.  They say Mom is a perfect candidate for the procedure because she isn’t eligible for many other treatments, such as resection, because her tumors are too widespread and plentiful.  She has around 12 lesions on her liver.  This procedure can only be performed once because of the tolerance of the liver to the radiation.  However, the doctors also spoke to us about putting the chemotherapy directly into the liver after this procedure to hit the cancer hard.   Dr. Schefter is the radiologist in charge of the dosing and radiation type that Mom will receive.  The type used in this procedure is flown in directly from Australia.  -Dr. Durham is in charge of placing the radiation in the correct artery and re-plumbing Mom’s arteries if needed to assure the radiation does not travel to any undesired locations (severe side-effects).  Dr. Durham will also perform the initial tests to determine if she is a candidate for this procedure. 

 We are very appreciative that we have this team of great doctors that are choosing agressive treatments.  And we have our fingers crossed that the tests will show Mom to be a viable candidate for this procedure!  We are also hoping for good results from the procedure itself!!  It takes several months to see the results of this procedure which already has me stressing.  This is due to the fact that the liver is initially inflamed and irritated by the radiation which translates to metabolic activity on the PETScan which usually indicates Progression of the cancer.  So we are not going to know if the PETScan is showing true progression and Mom’s cancer is growing or if it is simply due to the inflamation from the procedure.  And only time will tell.  Mom will have the prerequisite tests in a few weeks and I will definately post as soon as we find out anything.  We won’t know about the insurance approval until after that.  I hate that we even have to worry about that!

 And last but not least, we also met with Ann, the colostomy nurse to discuss Mom’s bleeding problems.  Mom has had a lot of problems with bleeding from her stoma (colostomy) all year.  We were very concerned about it but assumed it was due to the chemotherapy and Avastin.  However, we talked to the nurse and learned that it is a common problem with ostomy patients, especially those with liver disease.  She showed us several options of appliances and bags that can help minimize irritation to the area and lessen the bleeding.  We ordered a few samples from the company she recommended, Cymed.  We are hoping they will help!

Whoops…..Mom pulled out her Groshong Catheter!  Mom needed to use the restroom while she was getting chemo last week and she caught one of her tubes while in the restroom and pulled her Groshong Catheter out of her chest!  It didn’t hurt, it didn’t bleed much and it wasn’t as catastrophic as we first thought.   But it still really freaked us out! 

She is scheduled to have a port catheter put in next week.  It is often called a Port-a-cath.

• Port-a-cath.  A more permanent option involves the placement of a port-a-cath.  The port-a-cath is placed under the skin on the chest.  The catheter is then inserted into the superior vena cava vessel at entrance of the right atrium of the heart.  This catheter can be placed in radiology by an interventional radiologist or by a surgeon in the operating room. It is approximately a one-hour procedure. The useful lifetime of a port-a-cath can be as long as three to five years.  The port-a-cath can be felt under the skin and the nurse can find the entrance by locating the edges of the port-a-cath and inserting (cannulating) a special needle (called a Huber needle) into the soft middle section.   Medications can be given through the port-a-cath and blood can be drawn from it eliminating the need for a blood draw from the arm. The use of a portable pump and port-a-cath allows the medication to be given over several days in the home setting rather then as a patient in the hospital.  There are no dressing changes required but there is some maintenance involved.

They say the port is a more long term option since it is surgically inserted under the skin but there is no risk of pulling it out and the risk for infection is lower. 

She has another PetScan tomorrow and we get the results of the scan on April 1st!  We’re crossing our fingers for good results! 

The most recent shot Mom received was Aranesp.  It is given for patients who have developed Anemia or low red-blood cell counts due to chemotherapy treatments.  This is the 2nd time she has received this shot.  The first time was approximately a year ago.  I want to ask Dr. Kane about the safety of the use of this medicine and if Mom should be receiving it.  I found some troubling information about the safetyof this product which I have pasted below from the following link:

http://blogs.wsj.com/health/2008/02/27/anemia-drugs-raise-death-risk-for-cancer-patients/

February 27, 2008, 10:22 am

Anemia Drugs Raise Death Risk for Cancer Patients

Posted by Jacob Goldstein

More bad news for anemia drugs. Aranesp and Procrit (also known as Epogen) increase the risk of death for cancer patients, according to an analysis published in the current issue of JAMA.

The authors crunched data from 51 clinical trials and concluded that cancer patients who received the drugs to fight fatigue and avoid transfusions had a risk of death that was roughly 10% higher than patients who received a placebo. The patients taking anemia drugs increased the risk of blood clots in the veins.

“These risks have been previously defined,” Roger Perlmutter, Amgen’s executive vice president of research and development, told the WSJ. “There are benefits associated with use of these drugs, and there are risks.” Amgen sells Aranesp and Epogen; J&J sells Procrit.

Some of the key trials included in the analysis treated patients more aggressively than current guidelines recommend, and it’s unclear whether the drugs increase the risk of death when used as recommended, Credit Suisse analyst Catherine Arnold said in a note this morning. “[I]t can be argued that these results are somewhat irrelevant,” she wrote.

Still, the finding “will fuel FDA’s concerns regarding potential harm to cancer patients and raise the potential for substantial restrictions in the label,” Arnold said. The drugs’ labels were updated twice last year to include new warnings, the WSJ notes. And an FDA advisory committee is meeting next month to consider recommending more warnings in light of recent findings.

Dr. Kane may advise that the positive benefits of this drug outweigh the negative risks but I want to check with her just to make sure.  It doesn’t appear that the white blood-cell boosing drugs such as Neulasta and Neumega have the same negative risks.  However, I’m thinking I may need to do a little more research just to make sure.!

Mom’s blood cells weren’t quite up to what they needed to be but they decided to give her the chemo anyway.  And of course the temperatures dropped into the 20’s as soon as she got back into Colorado! They gave her a new shot for her red blood cells.  I’ll write more about it when I find out what it’s called.  Mom was feeling pretty ill after she got the chemo on Tuesday so I didn’t want to press her for too much information.  It sounds like Grams was happy to have her home!

Mom’s white bloodcell count was too low to receive chemo this week so she’s taking advantage of the break to get away from the cold weather in Colorado and is headed to Texas!  She hasn’t been to her own house in months and is travelling with her husband Jay (who she hadn’t seen for 2 months!) so she couldn’t be happier. 

Her CEA levels are down to 49 and we have 2 more treatments of the Folfuri/Avastin combo until the next PetScan.  Hopefully this time off won’t affect her progress but I can tell that she really needed a week off from treatment, to get out of Colorado and spend some time with Jay.  She has to enjoy life a little too!  

I can’t wait for her to get here!  There’s a new exhibit at the Natural History Museum in Houston so if she is feeling up to it, then we will hit the museum and Butterfly Pavilion.  She is eating really well right now so I stocked up on groceries so we can do some baking and cooking over the weekend. 

I wanted to give some more information about the treatment Mom is receiving for people that may be new to the website.  Mom was diagnosed with Stage IV metastatic Rectal Cancer (metastasis to the liver) in November 2006.  She immediately started treatment in Kerrville, Texas at the Cancer Care Center of South Texas.  She received chemotherapy treatment of 5-FU and a series of radiation treatments to shrink the primary tumor prior to surgery.  Shortly after the new year 2007, she underwent surgery to remove the primary rectal tumor and at that time Mom received her colostomy.  Her tumor was very low so required a permanent colostomy.  Dr. Barrington, her oncologist in Kerrville, did not specialize in colorectal cancer so we started looking elsewhere to find one.  We felt it was important since Mom’s cancer was so advanced to find someone who dealt with her type of cancer and metastasis on a regular basis.

We initially tried to get into MD Anderson in Houston, Texas because it is known to be the best and it was located fairly close to them.  But we didn’t have much luck.  They put us on a wait list and the weeks dragged on so we moved to Plan B which included anywhere else.  There had just been a new hospital built in Colorado called the University of Colorado Cancer Center, their Anschutz Medical Campus.  We found a doctor there, Dr. Madeline Kane, who specialized in metastatic colorectal cancer.  And she was accepting patients right away.  So long story short, Mom moved to Colorado to receive treatment.  She is currently staying in the small 2nd bedroom of her mother’s condo.  Thank you Grandma!  It has been a tremendous change for both of them but they are taking it very well.  Due to complications, it took several months for Mom to heal from the colostomy surgery.  She was not able to receive treatment during this time because the chemo and Avasitin both have adverse effects on wound healing and increase your risk of infection.  Being off a treatment for several months was not good for Mom’s cancer and her CEA levels climbed all the way up to over 300+.  They had been down to 15 at one point during treatment in Texas.  After Mom finally healed from her colostomy surgery she began treatment at the new hospital in Colorado. 

Since she arrived at the UCCC, Mom has completed 12 treatments (around 7 months) of Folfox, used in conjunction with Avastin.  These treatments were given on a 2-week rotation (when Mom’s platelets cooperated, 3-weeks if not).  She receives the chemo in the infusion room over a 4-6 hour period as well as wearing a chemotherapy pump for 3 days.  She was taken off of the Avastin for a couple of treatments because she was having bleeding problems on the Avastin, which is a common side effect.  Her’s were related to her colostomy and even required and emergency room visit and a two-day hospital stay.   To try to increase Mom’s blood platelet levels as well as her red and white blood cells (thrombocytopenia), Dr. Kane prescribed Mom Neumega and Neulasta shots.  She gets the Neulasta shots after she receives her chemo and receives the Neumega shots every day.  Which means she has to go to the hospital EVERY day.  Both of these shots cause her a lot bone pain, exhaustion, and weakness.

Mom is now receiving Folfuri in conjunction with the Avastin.  These treatments are given on a 2-week rotation similar to her previous treatments of Folfox.  After 4 of these treatments, approximately 8 weeks (depending on Mom’s platelets and blood counts) they will take another PetScan.  We are hoping for good results!!  She still receives the Neumega and Neulasta shots regularly and jokes that now the chemo days are the “good days” and the 10 days that she receives the shots are her bad days.  Dr. Kane is talking about introducing the radioactive beads into the liver after Mom completes these cycles of treatment.  The radioactive beads will help target the lesions on the liver and try to knock them down.  The eventual goal is liver resection surgery or remission without surgery!! 

I talked to Mom and she is doing pretty good.  Just more of the same; she is still in the grind of the chemo schedule.  I know she is tired of having me tell her that she needs to do more than just survive……………she needs to enjoy life!    She is always talking about the future and what she wants to do after she is cured but in the meantime she is stuck living in Grams’ small second bedroom (sharing it with Uncle Greg a lot of the time!), freezing her ass off in Colorado.  As if feeling like you were beat by a bat, daily, wasn’t enough.  So I understand why she isn’t thrilled on a daily basis and she misses Jay SO MUCH.  I think that is the worst part for her.  They are used to being together 24-7.  I feel terrible for her but at the same time I want her to enjoy her time while she is close to the family!  She used to see them only twice a year so I’m trying to get her to focus on the positive things.  

Mom is taking all the changes over the last year so well but I would sleep much easier if I felt she was actually happy.  But I guess when your life is so immensly interrupted, that is a lot to ask for.