My Mother's Cancer Story and Recent Updates

My stepfather, Doug passed away of colon cancer in November 2006 after a courageous 5 month battle with it, he was 62. My mom and stepdad had been married for 14 years. Six months later in May 2007, my mother was diagnosed with Stage 4 terminal non small cell lung cancer. There was a cancer mass in her right lung. It was located in the center and inoperable because of it's location. In order to get the initial biopsy of the tissue, her oncologist decided on a needle biopsy. In this attempt, the radiologist hit a healthy part of my mother's lung instead of the mass, therefore collapsing the lung. She then spent the next 13 days in the hospital with a chest tube and lung vac repressurizing the lung. A tissue sample was later obtained by way of a bronchoscopy. My mother then began the first line chemotherapy drugs Carboplaten and Taxol. These bi-weekly injections were in four hour intervals. The side effects of these two were very bad. Within a couple of weeks into the treatment she had lost all of her hair, got neuropathy in her feet ( the loss of feeling or numbness in your hands and feet ), had extreme chest and leg bone pains, extreme fatique and the loss of her taste buds. This treatment lasted two months. The neuropathy has remained permanent to this day. The evaluation that followed showed only a slight improvement in the reduction of the mass.

So the next step was to speak with a radioligical surgeon in regards to a new procedure and device called the Cyberknife. The Cyberknife is a super powerful radiation laser beam that is focused on a cancerous mass, it then bombards the mass with an extreme amount of radiation to destroy it or stop it's growth. The Cyberknife had already shown promise in treating brain, colon and prostate cancer. Using it for lung cancer was very new, but the surgeon said he thought it was worth a shot. The first step was for my mother to see a thorasic surgeon, so that he could surgically place three gold faducials ( pure gold beads ) in her right lung around the cancer mass for the cyberknife laser to use as a target or perimeter. This would greatly reduce the chance of radiating/killing healthy lung tissue near the mass. During the surgery to place the faducials, my mother's lung collapsed for a second time shortly after the surgeon had placed the faducials. The placing of the faducials caused the collapse. She then spent 11 days in the hospital waiting for her lung to heal and reinflate. It finally did. The following week after her release, the Cyberknife surgery commenced. It consisted of concentrated radiation for three days at three hour intervals, which is the same amount of radiation that a normal cancer patient receives in six weeks if treated five days a week. Two weeks later, the evaluation showed the cancer mass appeared to be inactive or stable. All further treatments were suspended at this point in lieu of a " wait and see policy. " A month later, a catscan revealed the mass still appeared to be inactive but now there was a new spot that appeared in her left lung and several of the lymph nodes in her chest were lighting up under a catscan. The cancer had moved.

A first run clinical trial was then recommended by her oncologist. The tandem trial chemo drugs were called Alympta and Syndax. This chemo combo was in the first phase of a national trial. Her treatment lasted just until the first three week evaluation, which revealed that the cancer mass had actually grown in size while on these experimental chemotherapy drugs. Her clinical trial ended that day. By the way, Alympta costs $17,000 per treatment, and in my mom's case at least it had the opposite expected effect.

So a new chemotherapy regimen was formulated for her. This was a third line chemotherapy drug called Tarceva. It was administered three times a week by injection for four hours. The side effects were similar to those of Carboplatin and Taxol, except for one. Into the second week of this treatment my mother contracted pnuemonia, a rare but very real side effect of Tarceva. My mom was hospitalized for 12 days, permanent lung scarring was incurred from this illness. After she got over the pnuemonia, a CATscan was performed and showed little to no change in the size of the mass. Near the end of this treatment, my mother's hair had finally grown back to about shoulder length, she was very happy with this.

Onto a fourth line treatment, a chemothrapy drug called Taxotere. This injectable chemotherapy drug had some of the worst side effects to date. Severe Chest Pains, muscle pains, fatique, loss of appetite, neuropathy... and she lost all of her hair again. She continued this treatment for about three months. The follow-up catscan showed no reduction in the mass in her left lung. The lymphnodes were also about the same.

At this point, the oncologist discussed with my mother about her taking a break for a little while to see what happens. He said that he wanted to see if the spots in her lungs were stable because of the chemo, or if they would be stable without treatment. He advised that she would come in for a CATscan every two weeks to see what the cancer was doing. She agreed and besides, she really needed a break.

A month and a half into the break, the CATscan revealed an increase in size in the left lung mass, her break was over. Her Oncologist suggested a brand new phase one clinical trial drug called Heatshock 145. He explained that this was a new class and kind of cancer drug. It wasn't a chemotherapy persay and worked in a very different way. The drug in studies had interupted the gathering and absorbtion of protein by the cancer cell. This was accomplished by blocking and misleading a celluar chaparone component which brought protein to the cell. Therefore the cell was inefficient and could not multiply. The only known side effects were lowered heart rate and blood pressure, fatique and in a couple of cases the patient's cornea had separated from its place in the eye. This was supposedly an extremely rare occurance. The pros outweighed the cons, so she began this treatment twice a week by injection, the treatments lasted 3 1/2 hours. About two months into the treatment, the study had been placed on hold by the FDA due to several Heatshock 145 patients dying while on the treatment. All patients who died were being treated for stomach cancer. The cause of death in each case was liver failure. It was determined that Heatshock 145 had drastically reduced the number of liver enzymes in these patients with stomach cancer to such a degree that the livers failed. The FDA then restricted any Heatshock 145 clinical trial for patients with stomach cancer. Patients with other forms of cancer were allowed to continue at a lower dose with close monitoring of the liver enzymes. The study resumed and my mother resumed treatment as well. Two CATscans, two months apart both revealed a reduction in lymphnode activity and in the size of the left lung mass. The first reduction was by 5% and the second by 13%.

Then about a month and a half ago, one morning my mother was having a very tough time breathing even with the oxygen that she normally wears at night. I took her to the hospital, an x-ray revealed a couple of broken ribs on her right side. Her oncologist consulted with her pulmonologist. They concluded that the ribs had broken due to coughing... well sort of. The initial damage to the ribs had been done during the Cyberknife surgery. In order to get to the lung, the radiation laser naturally had to pass through the rib cage. In doing so it destroyed or damaged the bones, bone marrow, and rib tissue to such a point that they became very weak... so weak in fact that a forceful cough could break them. Well, my mother has C.O.P.D. ( Chronic Obstructive Pulmonary Disease ), emphysema and acute bronchitus so she coughs all of the time. Her oncologist referred her to a pain management doctor. That doctor suggested a treatment called an intercostal pain block, which is where the doctor shoots your broken ribs up with a numbing agent. This is an outpatient procedure. She agreed to have it done and the pain mgmt doctor did it. This offered a substantial decrease in pain for several days. The following week an x-ray revealed a new broken rib. So at this point she had three broken ribs on the same side ( #3,#4,#5 ). Another intercostal pain block treatment followed. Two weeks later, my mother indicated that she had a new pain in her ribs that was lower than the others. On that day she was to have a Heatshock 145 treatment but the pain was so intense that she had to see her oncologist first. He called for an x-ray, which showed a new broken rib (#7), the lowest one. So two days later with four broken ribs my mother continued her clinical trial.

Last tuesday my mother was scheduled for another intercostal pain block treatment. She arrived and advised the pain mgmt doctor that she now had a fourth broken rib. He said that he would treat that one as well. The treatment went as expected and I drove my mother home. Early the next morning, my mother said that she couldn't hardly breathe and had a severe pain in her chest on the right side. She called her pulmonologist and he advised that we go to the emergency room and have an x-ray done, and for the ER staff to contact him with the results. So I rushed my mom to the emergency room and the X-Ray showed a collapsed lung, her third pnuemo-thorax on the same lung. With panic from labored breathing her blood pressure had shot up to 235 over 140 and her pulse had reached 225. She was in the tachycardia. Her pulmonogist arrived at the ER quickly and put in a chest tube. It was determined that the pnuemo-thorax had been caused by an errant needle puncture into the lung by the pain mgmt doctor while performing the innercostal pain block procedure. Two days ago her lung re-collapsed as the chest tube wasn't sufficient enough in size to do the job. Her pulmonologist inserted a larger chest tube. My mother is still in the hospital due this pnuemo-thorax. She is tethered to a manual vacuum which is currently drawing air out of her chest cavity. This morning's x-ray showed a slight decrease in the volume of air inside the chest cavity. Hopefully the puncture will begin to seal itself and she can leave the hospital in a few days. Her pulmonologist advised us yesterday that it is rare if a lung doesn't heal a hole or puncture but that it does happen on occasion. If that were the case, conventional lung surgery ( which is a very serious and complicated surgery from my understanding ) would be the option to find the puncture and patch it. I pray it doesn't come to that and I am optimistic that it will not. Please keep my mother in your prayers.

UPDATE : 7-8-2009My mother was finally released from the hospital where she spent 20 days from June 18th to July 7th. She was confined to the hospital bed for this entire time as she was tethered to oxygen and a manual vacuum device that was connected to her chest tube. After about two weeks of trying to get the puncture to close via the chest tubes with no success, her pulmonologist advised that lung surgery appeared to be the only option to close the tear. So she has video assisted lung surgery by a very good thorasic surgeon, this operation finally closed the puncture. She had to remain in the hospital for about another week and was released.

UPDATE : 7-21-2009Throughout her hospital stay her clinical trial study had to be suspended, so she was directed to have a chest x-ray to see if everything looked well enough to rejoin the clinical trial. If it did, the cancer research center would have to get an exception for her to be allowed back into the study as this was out of the norm. The exception was granted by the drug company sponsoring the trial and she resumed treatment. She completed her first treatment cycle back which lasted two weeks with no problems. UPDATE : 8-14-2009She then had a CATscan two weeks ago to measure the progress of the drug. The radiologist reviewed the CATscan and had noted that there appeared to be some lymph node activity in the left hilar area of the chest ( these are the set of lymph nodes closest to the heart ). The CATScan report was reviewed by a cancer research oncologist last monday as my mom's primary oncologist was on vacation. This oncologist advised that the lymph node activity was only noted in the report as a slight increase and that he would get with that radiologist personally to review the scan in more detail, but for now it was ok to continue the clinical trial. So she had a treatment on that very day, her next treatment was to be last thursday. So she showed up and was told a more in depth review of the CATscan had been made and it was determined by the oncologist and radiologist that the lymph node activity could very well be cancerous and that because of this my mom's participation in the clinical trial would need to end. So we came back home, she was very upset and understandably so. After all, this drug had worked for a long time by experimental trial drug standards, it also had very few side effects. We are scheduled to meet with her primary oncologist next tuesday to find out what the next plan of action will be. What clinical trials are available and the drug particulars on each. Please keep your fingers crossed that number one, there will be another one suitable for her condition and two, that it will no have terrible side effects. Her lung capacity and ability to breathe has never fully come back from what it was before she had the last lung collapse, hospital stay and lung surgery. I would say that since before her hospital stay, it's 50 to 60 % worse now. She is on oxygen the vast majority of the day and all night and walking even 30 feet or so will render her totally out of breath. Please keep her in your prayers and I'll update this blog as we get more information.

UPDATE : 9-17-2009 We met with my mom's oncologist about a month ago, he advised that from that latest CATscan, he didn't feel confident in saying either way, whether the hilar ( center of chest ) lymph nodes were enlarged due to cancer or still inflamed due to the most recent lung surgery. Since he wasn't sure, he advised us of a wait and see policy. He further advised that my mom would need to have a PETscan in about 3 to 4 weeks to see what the lymph nodes were doing. So last week she had a PETscan done and it revealed that there is a slight increase in hilar lymph node size from the most recent CATscan, The Radiologist also noted that the right upper portion of the lung ( where the tumor had been radiated with the Cyberknife ) appeared to be worrisome for cancer regrowth. At the time the PETscan was oerformed my mom's oncologist was on vacation and so a nurse practicioner under his advisement reviewed the findings with us. The nurse practicioner had also reviewed these results with the oncologist. He advised, that the new plan of action was to look into a new clinical trial at Baylor Hospital's Mary Crowley Cancer Research Center. The clinical trial doctors and nurses are currently looking into what experimental trial would be best suited for my mom. We should know something by the first of next week at the latest, I'll update this blog when we do.

UPDATE : 10-05-2009 Well, the meeting with my mom's oncologist took place about a week ago. He advised us that my mom did not qualify for any clinical trials at the Mary Crowley Cancer Research Center at this time. There was one clinical trial in question, but my mom's need and use of portable oxygen for the majority of day, every day, disqualified her for that particular study. Dr. Konduri ( my mom's oncologist ) advised that my mom begin a standardized chemotherapy drug called Gemzar. Gemzar is an injected drug for 30 minutes with an 8 day cycle time between injections. It's usual side effects are not suppose to be very bad, hair loss is not a usual side effect of this drug, however their can be a very rare side effect of this drug which can be very bad. This potential side effect can change the shape of red blood cells. DR. K advised that we should not expect a fantastic or great result from Gemzar, since it is considered a later stage chemotherapy drug, not a last resort drug, but later stage. He further advised that we are kind of near the end of the standardized chemotherapy drugs that can be used, as my mom has now had nearly all of them. But, he advised, that we could check out UT Southwestern Cancer Research Hospital in San Antonio or MD Anderson Cancer Hospital in Houston for more clinical trials if this Gemzar didn't yield a good result. Dr. K said that he felt sure that one of those two hospitals would have a clinical trial for my her. So, if the Gemzar doesn't at least stabilize the cancer, then we will check out those options with UT Southwestern in San Antone as a first option. So on that same day, my mom had her first injection of Gemzar, everything went fine, no major side effects, just fatique and the usual ones. Her next injection is tomorrow Oct 6th. A PETscan will follow two weeks from tomorrow to see the result. Please keep your fingers crossed and my mother in your prayers, I'll keep you updated. Thank you so much.