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I found out yesterday that I am in the new trial which will start on Oct. 21st. Now I just have to cut the muster when it comes to all the tests the trials protocol requires. Next Tuesday Oct. 15 I have to go have another CT Scan done. This time they are going to scan me from my head to my pelvis. This will be the first time they’ll be doing a brain scan looking for cancer, Robin of course is just hoping they find anything at all in the vacuous cavern I have for a head. Then on Thursday I will have a full blood panel done before once more going under the needle with Dr. Kim for another liver biopsy. Having Dr. Kim perform this biopsy on me for the third time I feel like I need to say to him, “So, we meet once again.” as if he were my arch nemesis in some campy James Bondish movie. Now if I can just remember to say that just before the anesthesia takes effect.
If nothing has changed and hopefully they don’t find that the cancer has spread any further then I’ll start on MEDI4736 the following Monday. Because this is all part of a phase 1 study everything is being done at Georgetown Hospital which of course adds to the overall transportation complexity.
I’m sorry for being a little late on this update. This past Tuesday I met with Dr. Pishvaian to discuss the clinical trial that I’m hoping to get on. I say hoping because even though he has set dates on his calendar it’s not a sure thing. Apparently they (Georgetown Hospital) have to submit the names of 8 patients on Monday mornings to be added to the trial and then wait for MedImmune to decide who’s in and who’s not. Because there are so many people who want to be part of this trial MedImmune is cherry picking the patients based on their type of cancer so they can have a wide spectrum of patients in the trial. While I can certainly understand this it does add a bit of anxiety to the wait. As it stands right now I’m scheduled to go in on Oct. 14th for another liver biopsy as part of the trials protocol and then enter the trial with my first infusion on Oct. 21st.
I know I had originally said that one of the upsides to this medication is the low side effects, but that only appears to be the case after the initial first few weeks. During the first two weeks while the medicine is putting my immune system into over drive it also apparently puts a hurting on the rest of the body. The overall effects, according to Dr. Pishvaian, leave you feeling like you have mono. Well I’ve been there and done that and know what mono feels like – blech! But if it’s only for the first two-three weeks c’est la vie.
Biggest prayer request is that I am able to get onto this trial and for an overall continuing sense of peace no matter the outcome.
Also please continue to pray for my co-workers son Sam as we await to hear whether he has osteosarcoma and what the treatment plan may be.
It confounds me at times how incredibly dense I can be over things that I thought I’ve understood for decades, but then there is a sudden illumination (along with the proverbial head slap) and I’m left wondering how could I have been so blind for so long. It happened to me again last night as I finished writing a letter to a friend who’s going through an incredibly difficult time. He’s a devout Jew and I sent him an old testament verse from Isaiah that a good friend had sent me. Not knowing if the Torah used the same chapter and verse notations as the bible I made a quick search to confirm that referencing Isaiah 54:10 would mean the same to him as it does to me.
I took great pleasure in the fact that I could share a verse that’s made a wonderful impact on me and prayed that he would read in it the same hope that I’ve found. And in thinking that I also thought how wonderful it was to be able to share my faith with my friend especially in the midst of such great tribulation. Sharing my faith? I’ve always put that specific phrase into the same context as evangelizing but that’s not what I was doing with my friend. We’ve tap danced around that subject before and I know he’s as firm in his beliefs as I am in mine and yet I was sharing my faith with him. For some reason that struck me in a totally different light last night.
I get so tied up with trying to bring someone to a knowing faith in Christ that I overlook what is really what I’m called to do and that is simply share why I have faith in Christ. Sharing my faith is doing just that, sharing with others in whom I have placed my faith and why. In that singular verse the one true God speaks to both us with the same assurance of His immutability in the midst of our suffering and in that I found great comfort and joy. I pray that my friend does as well.
Access to clinical trials offers new options for cancer patients
Trials now available at Olney hospital
For cancer patients such as Mike Kenney of Aspen Hill, clinical trials, now available at MedStar Montgomery Medical Center in Olney, offer new hope.
In May, Kenney, 52, began experiencing some gastrointestinal symptoms. An episode of dizziness and sweating in June landed him in the hospital’s emergency department. After testing, he was diagnosed with esophageal cancer, which has metastasized to his liver.
“Surgery is off the table,” he said. “Basically, I am on palliative care.”
Palliative care focuses on relieving and preventing the patient’s suffering.
Kenney said he was fortunate to receive all of his care at MedStar Montgomery, including participation in a clinical trial for patients with gastrointestinal cancer. He was directed to Michael J Pishvaian, a gastrointestinal oncologist at Georgetown University Hospital in Washington, D.C.
“I initially thought I would have to go to Georgetown, but since he has office hours in Olney, I am able to see him there,” he said. “I’ve also received my chemo at MedStar Montgomery.”
MedStar Montgomery recently expanded its services to offer selected clinical trials. So far, six patients have participated.
Kenney just completed a trial for gastrointestinal cancer patients that tries to tailor the drugs specifically to the patient, as determined through blood tests.
“It looked at how metabolism handles chemo. If someone has a slow metabolism, why give them a lot of chemo and have it sit there, or if they have a fast metabolism, maybe they could be given more,” he said.
Physicians and researchers use clinical trials to learn whether an experimental treatment is safe and effective. Participating cancer patients can benefit by receiving either the current standard of care, or a new and possibly more effective treatment.
“Clinical trials are relatively new to our treatment program in Olney,” said Mary Miller, a registered nurse and the hospital’s administrative oncology director. “They are offered all across the country, but usually they are part of a large university setting.”
Miller said that being a part of the MedStar Health system allows services that are normally offered in larger hospitals to be brought to smaller communities.
The first trial at MedStar Montgomery began in April, and Miller said she hopes that by offering clinical trials in Olney, cancer patients can have local access to any treatment they could get in a major city.
“Patients love the idea of not having to drive to Georgetown and having the same exact treatment available here,” she said.
Kenney said that receiving care at MedStar Montgomery has made it easier on family and friends upon whom he sometimes must rely for rides.
“I’ve had friends going through this that go to Johns Hopkins University Hospital in Baltimore,” Kenney said. “The facilities and physicians are top-notch, but it is a pain in the tuchis to drive there and park. Basically, it’s an entire day.”
In addition to the trial Kenney just finished, a second trial is underway at the hospital for patients with metastatic pancreatic cancer. The tumor is removed and analyzed to determine which combination of drugs will have the best effect on that specific patient, based on their molecular profile.
Trials usually originate with a physician who has determined a trend and wants to take that concept to the next level. Treatments and clinical trials have to be vetted through federal regulators. Patients who meet eligibility requirements must consent to the trial, although they can stop at any time.
Miller said there are lots of steps in getting a trial started at a hospital, including rules to safeguard patients, applications and training.
She said patients at MedStar Montgomery are very well read, and many have done their own research. Usually, physicians, cancer navigators or nurses share information on clinical trials with the patients.
“We are required to have some avenue to provide patients with the information on clinical trials,” she said. “The Commission on Cancer Accreditation requires us to offer information on clinical trials with the goal of raising awareness and availability. Patients rely on the doctors, and we are obligated to inform the doctors.”
Miller said that there is a tumor conference each week at MedStar, featuring oncologists, surgeons, radiologists, pathologists and nurses. Any newly diagnosed cancer case is presented and new clinical trials are discussed.
Health insurers don’t always pay for clinical trials, but Miller said many do, and it sounds as if all will after more provisions of the federal Affordable Care Act take effect in January. The two trials underway at MedStar Montgomery involve “standard of care drugs,” or specific drugs that are accepted by medical professionals for a particular disease or illness, which should be covered by insurance.
Miller said two or three additional clinical trials are expected to open at MedStar Montgomery this year, including one for prostate cancer and one for breast cancer.
Kenney was grateful for the chance to participate in the trial and plans to start another trial next month.
“Chemo will never cure me; it is just a matter of time,” he said. “The trials are a crapshoot, but they also offer a ray of hope and sunshine.”
I’m finally, feeling a bit better after last weeks infusion. Ugh, this took longer than I’d hope but what a difference a day can make.
Not sure why round #5 was so rotten especially when they took the 5FU bolus off the table which is what they suspect really adds to the nausea most recipients feel. I told the doc yesterday I hate to think what I’d have felt like if he’d left that as part of the last treatment. The only thing I’ve got going on now is a killer stress headache that I’ve had since Friday. It may be sinuses but other than a lot of drainage (that I suspect to be allergies) I’m not feeling any pressure in my sinuses. I feel like Roseanne Roseannadanna, “It’s always something, if it’s not one thing it’s another.”
So I’m feeling better and food is looking better and I’m heading out of town this weekend to spend time with my nephews while my sister and brother-in-law take the weekend off. So that’s what you can really be praying for me about. I’ve got 3 nephews that I’ll be watching; the two oldest 16 & 17 are bigger than me so I’m not sure who’s actually going to be watching who, but I’m sure I’ll be fine, really. The youngest is getting to skip school on Monday to hang out with me which should be a hoot. We’re going to meet up with Nikki and check out the downtown scene – what ever that is in Raleigh – and probably go some where trendy for lunch. It should be a blast and a nice break.
Next Tuesday after I get back I’ll be meeting with Dr. Pishvaian to discuss the clinical trial that I’m now slated to go on at the end of next month. I’m hoping to get an actual date and a bit more information on the treatment. I’ll let you all know more when I find out.
Thanks for all your continuing prayers and support. They really do make a huge difference.
I just got back from the Medstar Montgomery Infusion Center and my 5th chemotherapy treatment. I went in this morning to have the normal blood draw so they can see how things are looking. Once again the mediport refused to play nice and no matter what antics we tried the nurse could not get a blood draw from it. So we went old school and got it out of the water main of an artery I have on my right arm. Gwen the nurse is good, I kid you not I did not even feel the slightest prick.
I then went over to see Dr. Pishvaian and see what further details he had to share from last weeks CT Scan. He was very pleased with the outcome of the past scan. There was a marked improvement noted in multiple lesions in the liver, some of them to the point that they didn’t show up this time and the largest had measurably decreased in size. Overall from what the doc shared and the copy of the report I’ve read I don’t think we could have asked for more. The chemo has had it’s desired effect and my oncologist feels my body has put up with it well. Of course I told him that I didn’t think I recovered as well after the last treatment, that the nausea continued longer than before. He told me that the nausea is mostly attributed to the bolus injection of 5FU I receive before they hook me up to PIP.
Meaning; I get a big’ol straight shot of the same chemo drug I come home with for the next 46 hours on the portable infusion pump.
As I’m writing this I can already tell that I’ve got the chemo brain thing happening, or as I call it ‘fuzzy head’. Serious decision making is not something I even consider attempting at this point. And multitasking is even more laughable than normal. Think Dug the Dog from the movie Up. For the first time I also understand what they mean by neuropathy in my fingers. The tips of my fingers have the same tingling feeling you get when a part of your body has fallen asleep and the blood finally starts flowing again. It’s not what I’d call painful, but it is a wee bit annoying.
Oh, and I am on the list for the clinical trial that I’ve mentioned but won’t be getting on it till that latter end of October.
Yes you read the title of the post correctly, Happy Monday, and that’s not because I’m on vacation. After all the fun that I had at the end of last week being back to work today is an absolute blessing
If you will allow for a little whining read on otherwise – skip – to the next paragraph. Last Thursday I had my follow up CT Scan so my oncologist can see how the four rounds of chemo did in giving my cancer a good SHWACK!
Unfortunately the barium that I had to drink prior to the scan (nectar of the gods though it be) and the delicious BK breakfast I grabbed on the way into the office decided that they didn’t like each other and decided a tête-à-tête was necessary. Due to the ensuing rumblings of my stomach and a head that was beginning to swim I decided I’d rather see the outcome finished at home and left work early. Later that evening my right tonsil which had been getting a bit painful the last two days decided it was time to join in on the fun. The swimming head feeling was actually a low grade fever that visited me for the next two days while my tonsil insisted on being taken seriously by growing to goiter like proportions. I visited my primary on Friday and then actually went to the ER on Saturday when it got even worst. Unfortunately it wasn’t bad enough to warrant an all out assault nor were there any magic drugs to be offered. Bah even a sugar pill would at least give the pretense of doing something. Thankfully I awoke Sunday morning with the fever broken so goiter and I were able to attend church.
Tomorrow morning Robin and I will be meeting with Dr. Pishvaian to go over the results of the CT Scan. I’m hoping for a significant decrease in the size of the tumor in my esophagus and an abatement of any growth in my liver. I’m sure we’ll also be talking about the clinical trial that’s being offered by MedImmune. I know that if I am going to be a participant (fingers crossed/prayers sent/candles lit) that I first have to detox off the chemo for a month. Hopefully I’ll be able to start on the trial the first or second week in October. I’ll be sure to update you with all the fun details from tomorrows consultation. Until then I hope you’re experiencing a Very Happy Monday!
UPDATE 7:39PM: Well my happy Monday just went poof. I spoke with Dr. Pishvaian who informed me that because there are so many participants for this trial that MedImmune is asking that the trials team stagger the participant entry and I’m not slated until the latter half of October which means, drum roll please, I get to have another round of chemotherapy tomorrow. I told him you’re about to make a 52 year old man cry. I’d say it’s time for stiff drink but I don’t think my stomach will put up with that foolishness anymore. (Sigh)
OK so I’m refusing to end this post on a sour note. He also told me that he had a chance to look at the CT Scan and that it looked great. I’ll find out tomorrow the details on that but honestly did sound happy with the results. So silver lining and happy thoughts to all of you. good night.
Nothing like a little medical jibber jabber poured into this poor laymens mind to create a good old fashioned headache. In trying to research what the MEDI4736 clinical trial is all about I ran across a table of like trials and saw headings like:
- Biologic [B7H1-specific engineered human IgG1]
- Roles [T cell activation and tolerance]
Being the Google searching dweeb that I am I couldn’t help but dig a little deeper. Unfortunately I ran into sentences like: “Antigen-induced activation and proliferation of T cells are regulated by both positive and negative costimulatory receptors of the immunoglobulin (Ig) superfamily.” which simply leave my head swimming and my eyes glazing over.
Then I found the abstract that went along with the table I had been looking at.
Sheng Yao, Yuwen Zhu & Lieping Chen
The past decade has witnessed a surge in the development of immunomodulatory approaches to combat a broad range of human diseases, including cancer, viral infections, autoimmunity and inflammation as well as in the prevention of transplant rejection. Immunomodulatory approaches mostly involve the use of monoclonal antibodies or recombinant fusion proteins that target cell surface signalling molecules on immune cells to drive immune responses towards the desired direction. Advances in our understanding of the human immune system, along with valuable lessons learned from the first generation of therapeutic biologics, are aiding the design of the next generation of immunomodulatory biologics with better therapeutic efficacy, minimized adverse effects and long-lasting clinical benefit. The recent encouraging results from antibodies targeting programmed cell death protein 1 (PD1) and B7 homolog 1 (B7H1; also known as PDL1) for the treatment of various advanced human cancers show that immunomodulatory therapy has come of age.
Thankfully I’m just smart enough to understand most of the abstract if not the actual research papers. Let’s hope that these researchers from the Yale University, Department of Immunobiology are correct and that this new therapy truly has come of age.
Last treatment of Folfox6 at least for the current clinical trail that I’m on and maybe for some time to come.