GVAX Troubles?

Looks like Cell Genesys who is trying to market the GVAX vaccine is having some problems: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/08/28/BU7012JCJD.DTL We need to find out more about how this data reflects on Hopkins work.

Six Month Checkup

Another six months have passed and we are very close to Mom's 3 year diagnosis anniversary. She recently had her CT scan which was said to be clean. Her CA 19-9 came out to be 45 which is near the high end of her previous history (priors include 48 and 43) but we hope that this is nothing to be concerned about. She received the GVAX booster shots and her reaction was deemed favorable to it (itching, swelling and slight fever).

Six Month Checkup

Once again, Mom did very well on her 6 month checkup. Her CT was clean and her CA 19-9 came in at a normal 32. So we are once again very happy and relieved. She begins her round of the Hopkins vaccine on Monday. Mom and Dad are planning a big trip to Korea in May so hopefully she will feel well enough to go. Her recent problems include continued problems eating and more recently some pretty severe back pain. It's unclear what is causing the back pain but her GP thinks it is musculo-skeletal. She did some physical therapy but it doesn't appear to be helping too much.

Happy New Year

Our mother celebrated her 72nd birthday on New Years Day with the whole family. It is more than two years past her initial diagnosis. She has started to suffer some back pain on her left side. Her new GP took some X-rays and thinks it is likely muscle/skeletal pain. He prescribed some pain killers and we'll find out the X-ray results in a few days. Her next checkup/vaccine treatment is scheduled in March. Afterwards my parents hopefully will make a trip to Korea.

Scheduled Checkup

Dr. Laheru just said that Mom's CT scan is clean. The pseudocyst actually may have shrunk in size and is nothing to worry about. CA 19-9 results will be out Friday. Next week, Mom will have her second full-week round of injections of the Hopkins vaccine. We're closing in on two years from diagnosis which will be a wonderful milestone. Mom has been also feeling somewhat more energetic these days. She attributes this to drinking a soy milk supplement. She had tried all the milk based supplements such as Ensure, but these all make her nauseous. We were a little concerned about the soy since some studies discourage the use of this for breast cancer patients but Dr. Laheru doesn't think it's a problem. Update: CA 19-9 is within the normal range at 32!

Research Updates

It looks like Dr. Picozzi and Dr. Laheru have been busy. A study using a variant of Picozzi's protocol (Gemcitabine instead of 5FU, with Cisplatin and Interferon) has shown very good results for adjuvant therapy (44% 4-year OS). Laheru has also published updated results that show a median survival of 26 months from the phase II study of the Hopkins vaccine. I think this wasn't as promising as I was hoping (although I'm not sure I understand the numbers fully) but it still seems to be significant.

Vacation

We finally convinced our parents to go on a proper vacation. They were always too worried that my mother wouldn't enjoy herself because of her lack of energy and frequent stomach/eating issues. We kept insisting that she could keep her same relaxed routine even when they were on vacation. Well, they ended up really enjoying themselves in Hawaii and Las Vegas (over their anniversary). Hopefully, they will now begin to plan and take more trips.

Rest in Peace Judith

It's a sad day as we heard our friend Judith passed away yesterday.

CT Scan and Blood Test Results

After another nerve-wrecking day of testing (CT and blood test), we were thankfully told that everything still looks fairly normal. They did see a small area of fluid collection on the CT scan that grew from January. They believe that this is a pseudocyst or a poorly defined loop of adjacent bowel. Dr. Laheru does not seem to concerned about it and says we should just monitor it. Her CA 19-9 results came out at 35 which is still in the normal range. My mother was also able to finally have her mediport removed. Her next set of tests and round of vaccine injections will be in September.

Second Vaccine Round

The first set of vaccine injections wasn't too bad. My mother had hard swelling around the sites and experienced fatigue for a few weeks. She went for her second round on February 26 and has had even less side effects this time. I do hope that the vaccine is effective however. Overall, her condition appears to be improving and we believe she should be able to come out to visit California after her third round in March to attend my son's 2nd birthday. We are definitely looking forward to their visit.

Laheru's Vaccine Trial

After Christmas, we set to work trying to get my mother enrolled in Laheru's GVAX vaccine trial. Hopkins now has a trial for patients who have finished their chemotherapy regimen by at least one month. This is another phase II trial that will accept up to 60 patients. The coordinator mentioned that they expect it to close around the summer time.

Laheru just released updated results from the first phase II trial for the vaccine. About 60 patients at Hopkins were given the vaccine shortly after surgery and concurrently with chemotherapy. The 2 year results that were released a few years ago seemed very promising. The updated results don't follow the same stellar trend but they still seem to show significantly better results than just standard treatment alone: 26 months vs. 18 months median survival.

To enroll in the trial, you need to have a clean CT scan and your blood test numbers need to be relatively normal. The first time we tried, our mother's neutrophil count was too low. The next week that we tried, her liver AAT count was abnormally high - around 300. My mother had been taking the antibiotic Ciprofloxacin which was prescribed in November because of her chronic fevers. The Cipro worked wonders on her fever, so she was advised to continue taking it for several months. It turns out that Cipro might be harmful on your liver. She stopped taking it and 2 weeks later her liver counts were normal again. So we finally were able to get into the study.

The study involves getting a series of injections of the GVAX vaccine. The injections are given monthly for 3 months and then every 6 months. The first treatment involves getting 6 injections of GVAX, a tetanus shot and having a skin biopsy done. For the first week, you need to go in every day for bloodwork. My mother had her first treatment yesterday. The side effects have been fairly mild - just some swelling on the injection sites and she seems somewhat tired. Nothing like chemotherapy.

CA 19-9 Results Down

We are thrilled that the CA 19-9 came out at 18 which is the first time the marker has ever gone down, breaking the upwards trend - A great Christmas gift. Peace be with you.

Latest Checkup

Our mother saw Dr. Laheru this week. The great news is her CT scan was once again clean. We are awaiting her CA 19-9 results which we should get shortly. If those numbers stay in line, I will be very relieved. My family is heading over to spend Christmas in Virginia so we will be very thankful for any good news.

We had a lot to discuss with Dr. Laheru with respect to the next steps for her treatment plan. Basically we have decided to not complete her Gemzar chemotherapy. Our mother had completed only 1 of the 9 Gemzar infusions before she had some bleeding incidents and her stomach condition deteriorated. She has been very weak and has had problems with her eating and weight for the last year. Instead, we are going to try and start her on the Hopkins vaccine booster trial in January. Dr. Laheru mentioned that new results for the vaccine will be published in January but he wouldn't tell us if the results continue to look promising or not.

It's now been slightly over a year since our mother's operation. She has gone through a lot of suffering and she handled all of this with tremendous strength and a wonderful attitude. Her stomach pain and eating problems continue and don't show any signs of improvement but we hope that things get better next year. I hope she will be able to start enjoying her days a little bit more this next year and that she will be able to travel.

Happy Holidays.

CA 19-9 Results

My mother's CA 19-9 result came in at 48. Dr. Laheru is taking a wait and see approach - we are scheduled for another blood test and CT scan in early December. We need to decide whether any action is warranted right now.

Eating Issues

After the stent insertion, we were hopeful our mother's condition would improve. Although she was certainly better than when she was in the hospital, her condition didn't improve that much. She still continued to suffer from terrible stomach aches, and her chronic fever returned. She went back for a follow-up with Dr. Hutcheon and we asked for some antibiotics. After she started taking the antibiotics her fever FINALLY subsided. It has now been a couple of weeks with only one small incident of fever. Dr. Hutcheon has prescribed the antibiotics for her indefinitely - we need to verify that this is OK. I suspect that all along her problems were related to this infection that caused her fever and stomach pains. I suspect that this condition worsened when she was last admitted and that perhaps the stent was not really necessary. In any case, she's doing a little bit better although she still has to eat very very carefully and she has not been able to gain any weight abover her 98 lbs. She has a hard time digesting certain foods and it turns out that one of the best things for her to eat is maguro sushi. That seems really easy to digest. I worry a little bit about getting some kind of food germ from the raw fish but the benefits I think outweigh the costs at this point. She has another CA 19-9 scheduled on Monday this coming week and I am very very worried about the results due to her previously slightly rising values. I am praying that the result is stable or lower than before. It has now been about 1 year since diagnosis - a year of struggle and suffering for her - I pray that her condition improves.

Partial Blockage

After the bleeding incidents, we were all hoping our mother would be able to gain some weight so she could start back on her chemotherapy. However, she started getting weekly fevers in conjunction with sever stomach aches and the inability to eat. This would last for a day and then she would recover. However, a couple of weeks ago she had a very bad attack that lasted for many days. During this time she had high fevers and she barely ate for over a week. So we brought her to Hopkins again and she was admitted. A gastric emptying test the day before she was admitted showed that the food was just staying in her stomach. Dr. Hutcheon performed an endoscopy but was concerned that there might be multiple "strictures" or partial blockages. She did another barium test that showed that things improved. However, Dr. Hutcheon opted to insert a metal stent at the opening between her stomach and her intestines. She was released after about 9 days in the hospital and we are hoping that this will give some resolution to the issue. She is very weak and still suffers from frequent stomach issues. She just can't catch a break. Her weight has dipped down to 97 lbs.

We are now aware that she really needs to watch exactly what she eats. One thing that is interesting is that when she eats tuna sushi, she doesn't get a stomach ache. I know that there might be some risks with food poisoning, but the benefits here for her seem to outweigh the risks. So maybe she just needs a lot of sushi :->. Our parents are planning to come out to California so I'm hoping her condition improves over the next weeks.

We've also had some slightly worrisome CA 19-9 results recently. One test came out at 43 (previously at 26) but we retested and it was at 32. So the trend appears to be upwards which is not good. However, Dr. Laheru said it was still within the normal range. There's probably not much that she could tolerate in terms of chemo even if we had a higher number so we may just need to wait it out and retest. We're trying to go over strategy at this point - we may have to decide between completing the rest of the Gemzar treatments or trying to get her on the Hopkins vaccine trial. I need to find more information from Dr. Laheru in order to make this decision. I pray that her condition continues to improve.

Recovering Again

Mom, Dad and Kyle in early May before they went back to Virginia.

I haven't updated things in a while. I'm very happy that we went to Johns Hopkins. Dr. Hutcheon performed an endoscopy and cauterized several small areas that he said were bleeding. The next day, my mother had a normal looking stool for the first time since the first bleeding incident began back in early June. Whatever Dr. Hutcheon did, was really fantastic. My mother recovered in the hospital for a few days (her HCT was at 21 this time when she was admitted) and was released after a few days. Her HCT was at 34 when she was discharged and continues to hold steady. Dr. Hutcheon also has set up follow up endoscopies to check up on things periodically. I like his proactive approach. My mother though is still suffering from some terrible stomach aches after she eats. This is likely due to the radiation gastritis. She's unable to gain weight and remains at about 100 lbs. We've held off again on the chemotherapy until she has a chance to gain more strength back. Dr. Laheru ordered a CA 19-9 this past Wednesday and the results were similar to her last test so we're glad to hear that (about 26).

Very Concerned - Third Bleeding Incident

We checked Mom in today at Hopkins. She had suffered from weakness, very bloody stools and fever the last few days. Her HCT was at 21.0 today down from 25.6 on Wednesday and 29 a week ago. Clearly the bleeding hasn't stopped. Dr. Hutcheon performed an endoscopy and colonoscopy today. In our brief conversation today he said he cauterized a couple more small areas and that she suffered from radiation gastritis. I'm concerned the VMP phase I may have been too much for our poor mother. She's receiving blood today and I pray that we can resolve this issue for the long term. What I've read about upper GI bleeds is pretty scary. He mentioned that this condition may be chronic but he seemed to reassure me that it was manageable. Another Dr. who came by seemed somewhat ominous in her comments but I didn't want to press the issue at the moment. I'm very concerned.

Bleeding Again

On June 28 Mom found blood in her stool again. She went back to the ER at Reston Hospital and was admitted with very low blood levels. To go back again so soon was very depressing for her and she remained in the hospital till yesterday. During her stay they performed a couple of endoscopies, an angiogram and a nuclear medicine scan. The two ulcers that were cauterized last time had still not fully healed but were not the source of the bleeding. She had diffuse bleeding around her upper stomach area that was hard to stop because there were so many sources. Dr. Plotner said the lining of her stomach looked very raw and this was called gastritis. I suppose this was probably due to the one Gemcitabine treatment she received. We're scheduled to see Dr. Laheru this week so we'll need to see what to do at this point. We've also scheduled a follow up with Dr. Cameron. It's a pretty discouraging setback. Mom lost a lot of weight in the hospital since they had her on a liquid diet for almost a week. We need to figure out how to prevent this from happening again.

Second Phase Chemotherapy

Our mother began the second phase of her chemotherapy last Thursday after having a subcutaneous mediport inserted on Monday. She was given Gemcitabine via IV for a little over an hour. The nurses gave her Zophran for any potential nausea. Her reaction to this first infusion wasn't too bad. She suffered some very mild nausea and a mild fever for a couple of days (100.5 degrees). But she was going out to lunch by Saturday so I think overall it wasn't too bad. Hopefully it will continue to not be too difficult. Today is our parent's anniversary - I hope they are enjoying themselves.