Archive for the ‘Immunotherapy’ Category

From the Saint to the Spiritualist Church

Well, after visiting with St. John, there was more to experience. My friend Rob knew of this church he wanted me to visit, they did free Reiki healing and did psychic readings too. This sounded like fun and maybe someone from the other side could appear and give me the go ahead for some treatment that would definately work for me.

So, off we drive to Franklin and Clay and get there just a tad late, we rush in all flustered and sweaty while all around us are quiet meditating people. Rob directs me to this special healing room where about five people stand aside chairs, in the chairs sit people who need healing. I took one chair and enjoyed my session, it was relaxing and peaceful anyway.

After the healing we all went to the main room of the ‘church’ and listened to a story about tolerance, this was followed by the church business, and after that came the psychic readings.

Well, of course I hoped that I would be called, but it wasn’t to be. At one point it almost seemed so, they were talking about the African Savanna and British stuff, and I thought, well the British stuff matches, but then the woman behind me claimed it, even though she didn’t really have any meaningful connection to Africa. It seemed like that all around, I guess it wasn’t a day of great communications, everyone was told to de-stress and all the people called on were already known by the psychics (they would call them by their first names!) It just didn’t appear to be very valid, but perhaps I just arrived on the wrong day.

First KOWS Meeting

Well, at last – the first KOWS meeting happened. There were four of us DJs from KGGV there and about 15 other people who are starting shows. It was an interesting group and there is a lot of talent at the station. My day was made when a DJ came up to me and told me he used to listen to me on KUSF in San Francisco. Wow. During the meeting we all introduced ourselves, told about our programs and talked about some of the things we could do with the station, starting with announcing the April Fools Day Parade which is due to occur on the 5th of April. It is said that it is fun. Lets hope so.

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Back to Christine

Well, I feel I am ‘normalizing’ again, less crazy angry Christine and more of the ‘well, thats the way it is Christine’ who is making plans for the future.  I guess that will teach me to google and try to take command of my medical care by reading my medical records, now I know why they put it in such alien language.

Went to Church

That was pretty unusual for me, and a Greek Orthodox church to boot, not usual at all for this lapsed methodist.  The reason was to see a saint, called St. John, who is known for healing miracles.  He is buried at the church and you can just go to the church, put a little donation in the box, then enter into the main part of the church (which is on Geary Blvd.), the church itself looks large from outside but small and almost cozy inside.  The first miracle.  I felt very comfortable inside, stained glass to the right and left, lots of gilting, various podiums with stations on them, and a tower at the top, looking like a separate piece of architecture a high round tower with windows ramdomly attached (it seemed).  St. John was to the right as I entered in his own small shrine.  There were pews at the entrance and I sat in one, looking around trying to figure out what I was supposed to be doing.  I saw a man lighting the candles around the church, another man was spreading incense as he walked around the church and the third was singing meditatively (I’m sure theres a correct word for it but I can’t get it off the top of my head).  It was extremely peaceful, but at that moment I didn’t feel entirely peaceful. 

So I feel comfortable enough now to go to see the saint.  Up I stand and walk over to the side of the room, walk up the little steps to pay my respects.  Some people kiss the floor but that doesn’t seem right for me to do, so I spoke some respectful words to St. John  – asking him if it was ok for me to approach him and ask for help.  It seemed I got the OK so I went closer, seeing the naked hands of the saint, embalmed, dark dark brown hands.  As I started asking for help (which I didn’t do out loud) I started crying – something I don’t do at the drop of a hat especially at my age.  I asked the saint for help and felt some kind of response.  Who would dare share these feelings, am I nuts to think a dead saint could heal me?  Or am I nuts to allow some doubt to enter and maybe spoil the process?  I don’t know, but this stuff all goes through my head, but mostly a feeling of being accepted and cared for went through me.  I stood there for  a few seconds, said “Thank you” to the saint and went back to the pews.

Once back I felt so relaxed and almost like I could testify to a miracle, even if he didn’t cure me he moved me in the style that a wonderful piece of music would ‘move’ me, changing my mood drastically.  I spent more time taking in the church and its cozy beauty, in fact I almost fell asleep (it was about 5 p.m.) sitting up!  Out of calmness, of course – not from boredom or tiredness.  A few minutes later I felt moved to go and see the saint again.   This time a smile glomed itself onto my face and I felt happy, who knows why?  I certainly felt that something happened and hope that the saint has been good to me.

Then to Home

After the second visit I left, talked with my friends brother, who turned me on to the saint after the saint had cured his sciatica.   I recall my aunt who was cured of an ongoing (for over ten years) back problem that the medical authorities had wanted to give her a body brace to help with.   It was a pretty bad back problem.  For a couple of years my aunt had been getting help doing housework and other stuff difficult with a bad back, from her neighbor.  The neighbor suggested one day to my aunt that my aunt visit her church’s faith healer.   My aunt wasn’t (and still isn’t) a woman of orthodox faith and yet two hours after visiting the faith healer, her pain went away – never to return!  And she still doesn’t go to church.  So, I see no problem with adding the saint to my list of possible cures for cancer.

I Got An Email From Dr. Slavin

There is was!!!!!  Gasp I said as I opened my hotmail account (before it started acting up) and there was the email from Dr. Slavin that I had been waiting for for several weeks.   Would he accept me?  I opened the email, to say I was nervous was just not good enough.  So, I open the email and start reading and the first paragraph he mentions that he needs more updated records, only having my PETscan from April of last year.   This pisses me somewhat as I went out of my way to give the people his address, phone number, fax number and email and they said that they would send the info along.  But, they also said they would send a copy to me and they never did.  So, I faxed off a copy of the radiologists report to the Dr. and will have to go by the oncologist’s office to get a copy of the CD that they put my PETScan on.   They did this before when I went to Daniel Dunphy in S.F., they said ‘no problem’ and then didn’t do it.  When they sent me to a physical therapist – they got the records out to them and that was just for my neck – why not send my records to actual doctors.  Nag nag nag, it just seems unjust and just not right and other things with just in.

Onward I go

Well, I swallowed my pride and called in the doctors office to get some pain meds.   It was pretty easy, just left a message with the nurse practitioners and they called back, asked how things were and voila a prescription from the Doctor!  And boy did I need it.  Because it was a narcotic I had to drive an hour to the office to pick it up (they suggested mailing it, can you imagine waiting four or five days for your pain meds, sheesh!).  

The drug is Endocet and works well, mostly, but I worry now that I will be on painkillers all the time.   Usually I wait until the pain arrives before taking meds but this time the pain is just too enduring to do that and when I don’t take the meds I can feel the pains coming back.  Its very frightening.

Talk It Out

I guess I should have asked the nurse what this pain means, whether it could go away, and how soon might it get worse.    I suppose I am afraid to ask, when I have these pains I feel that I must only have a short while left to live. 

Oh well, wrote to my PD at KGGV and asked him to let me know if I sounded like I was on drugs on the air.  Have to have some dignity!

Dr. Slavin wrote back

Well, I still don’t have a prognosis on whether Dr. Slavin will take me on or not, but I wrote to him again today because I haven’t heard from him for two weeks, and he emailed back to say that he would get the answer to me (via his secretary) early next week.  Hopefully I can stave off paranoia till the email arrives.  I am so excited, so nervous.  And, believe it or not I have about a third of the amount of money I will need to get treatment by the Doctor, thats a miracle in itself!

Getting Over It

Well, its been a few days now since I’ve had my new diagnosis and I’m trying to digest it and not get too bummed out, that won’t do any good.  So Monday I had a meeting with my oncologist, he went over my medical records (not all as I found out) and sugar coated it a little, saying it was growing but not really fast, with extra tumors in the lungs, definate cancer now in the pelvis, but thankfully my liver is ‘stable’ as they put it.  He suggested another kind of chemotherapy called Erbituz, I haven’t googled it yet but I’d guess its kind of yukky.  I asked doc about Vitamin C and Vitamin D and he says that Vitamin C doesn’t really help, and Vitamin D might help prevent but no more, I asked about immunology and he mentioned they were doing something like that at Stanford, that the first patient had great results but the next 19 didn’t as the tumor learns to change before the vaccine gets to it.  I don’t know, I wanted to draw his attention to the figures on chemotherapy – not too heartwarming – but didn’t want to make it into a full fledged argument as it was working its way in that direction.

What Is This?

I asked for a copy of my PET Scan when I left my doctors office, and when I got home I started reading it and making use of google.  Well, did I have some sort of surprize waiting for me.  Of course there was peritoneal carcinomatosis which is a lot of cancer in the abdomen, I googled that and it said ‘considered terminal and end of life situation’ yowser I hate that language.  Actually it said that these days they can help by ‘harvesting’ the foci I guess, though with all the stuff I have going on I can’t see that happening.  Then under the section called ‘other’ I saw this: a fair amount of air is present in the vagina, which may be incidental though the finding does raise a possibility of some type of colovaginal fistula.  What is that?

Oh My God

So I google this, and can’t find colovaginal fistula, but find out what a fistula is (an abnormal connection) and read in Wikipedia about rectalvaginal fistula which is an abnormal connection between the vagina and rectum.  Shucks, so I guess the colovaginal fistula would be an abnormal connection between the colon and the vagina.  Lovely, just what I always wanted.  I’m a freak.  Actually it makes perfect sense, ever since my radiation things have seemed a little weird down there, there were times when I thought that my pee was exiting from my vagina, and incontinence is a close companion, even Kegel exercises didn’t help – and this would explain all that, including the urinary tract infection I had a week or so ago.  I expect that will be a regular occurance for me now, or so it says in Wikipedia.  Wish my doctor or my nurses had mentioned this and gone over it with me, I’m disappointed to say the least, its not like I’ve never mentioned troubles with my vagina to them.  Oh well.  This reminds me when I first had my cancer diagnosis and signed up for a support class, at the first one I heard a story of a women whose sister had radiation  which seared the vagina shut and she had to have surgery to fix it, makes you wonder how often this happens.  The Wikipedia entry said that a lot of problems occur because women are too embarassed to bring this problem up (you don’t say) and their bodies get weak from recurring infections.

KOWS

So on the good side I went and did my first show on KOWS yesterday, and had a blast.  I doubt that more than 5 people were listening, but who cares, not me, I loved listening to all my great music over good speakers, played stuff like “In The Nursery” Bill Laswell, Captain Beefheart, Chemical Brothers, Scenic, Lanterna and lots more.  You really missed a great show there!  Well, at least something is going right in my life

Dr. Slavin

Got an email from Dr. Slavin last Thursday, he now has all of my records and is getting ready to do his consultation.  I am trying not to get too anxious about this but can’t help myself.

St. John What Can You Do

It seems that there is a dead saint in San Franciso at a Greek Orthodox Church off of Geary Street that can perform healing miracles so what the hey I think I will try that too.  I believe on Wednesdays around 5 p.m. you can visit the saint’s coffin and touch it.  The brother of a friend of mine has suffered from sciatica for 18 months and he kissed the coffin and lost all pain from the sciatica, he is convinced it is a miracle.  And miracles do happen.

Still Not Gone

Awaiting my next PetScan, set for the 24th.  I occasionally still have a bloated stomach, on Friday I went to see my GP doctor about my personal problems and she suggested maybe cystitus, which made sense, and she prescribed me antibiotics.  I think I may have mixed my supplements and antibiotics because on Saturday night I was throwing up six times between 5 p.m. and 11 p.m.  I’m hoping its because of the antibiotics anyway. 

Still No Word From Dr. Slavin

But that might be because I mentioned I was going to get a PetScan soon and would send it to him when I had it done.  He probably is waiting to do that, plus dealing with building his own hospital, guess that would make anyone busy.

Off to See Some Art

Went off to the local theatre yesterday, its all volunteer, and had a great time.  There were eight plays and all of them were humerous, succesfully so in most cases.  I laughed a lot and after the shows there was a reception for the playwrights so I got to eat a lot of good food and share some great company, you can’t beat that.  Robert from the radio station went with me and we might  go to the John Mayall show on the 24th in Santa Rosa, if we can get on the guest list, it shouldn’t be too difficult for Robert as he wrote a review of Mayall that helped promote the show, but I am holding my breath as to whether I can get in as his plus one.  Lets see how my karma works out.

More Radio

Got a call from Phil of KOWS, another local volunteer radio station around here, I had expressed interest in a show and he called me up.  We decided on Tuesday from 1-3 as my show time, so there we are . . . the 22nd, tomorrow, will be my first show and I’m looking forward to it!

Email to and from Dr. Slavin

Dear Ms. Lowry,

Indeed, we are now in the process of clinical application of innovative modalities based on immunotherapy and other personalized approaches for the treatment of cancer in patients that are resistant to conventional anti-cancer modalities or with metastatic disease not expected to be cured by conventional anti-cancer agents. Our methods focus on using a two-step approach:

[1] Conventional tumor debulking modalities (surgery, radiation therapy and conventional chemotherapy, which in your case may have been already exhausted;

[2] Application of innovative yet experimental modalities involving allogeneic cell therapy with in vitro activated anti-cancer effector cells, other selective anti-cancer agents not excluding newer compounds targeting cancer specific intra-cellular signal transduction pathways, treatment with cancer-seeking viruses and using personalized anti-cancer vaccines. As a rule, we prefer to treat patients with poor long-term prognosis but at a stage when they are still in good clinical condition, preferably at a stage of minimal residual disease. We prefer to deny treatment for patients with poor performance status with end stage and bulky disease, with anticipated short life expectancy that may not allow sufficient time for immunotherapy to be effective, thus avoiding false hopes, frustration and unnecessary expenses. Yet, if the general patient’s condition (performance status) is still reasonably good, despite advanced disease, and the patient and family are eager to exploit every possible modality, can afford it without sacrificing unavailable means, understand the experimental nature of our procedures and also willing to accept a loss in case we cannot do the impossible, we may be willing to try, but only after receiving the full details and making sure the patient fulfils the minimum requirements for any of the ongoing protocols. In case the patient wishes to proceed corresponding with our center before making actual decisions, realizing that many of our unique treatment options are highly experimental, we will be glad to do the best we can. In general, our approach is personalized and therefore, we need to characterize the details of each tumor because our approach is both tumor-specific and patient-specific. Unfortunately, now in my new location in Tel Aviv at the International Center for Cell Therapy & Cancer (ICTC), I am overloaded with requests for consultations from all over the world, so I have to be selective since it takes much of my time to review each request and provide a personalized treatment plan. Therefore, in case you wish to proceed with the consultation over emails I will need your most recent CDs and then spend much time with additional information I will need, so all of this means more of my time. In that case I will have to charge for this consultation a global fee for the time I will need to spend for reviewing the case, and then provide the patient and/ or the treating physician with my final recommendations, with fully detailed explanations of procedures that may be applicable at our center. In case the would like to proceed, electronic transfer of consultation fee should be made addressed to Biotherapy International (not to Prof. Shimon Slavin), as follows:  (censored). Here is my address for CDs, medical report and any additional hard copies of relevant materials (please avoid sending piles of irrelevant old blood tests and full copies of patient’s chart): Shimon Slavin M.D.Professor of MedicineInternational Center for Cell Therapy & Cancer (ICTC)At the Tel Aviv Medical Center, 6 Weizman Street, Tel Aviv 64239 Israel

 On 12 Dec 2007, at 02:07, Christine Lowry wrote:  Dear Doctor Slavin:  My new doctor, Dr. Dunphy, of San Francisco, told me about you and your groundbreaking work using immunology techniques to attempt to treat cancer. I am very interested in seeing if I can get treated.  I am stage IV Colon Cancer, diagnosed at stage IIIb in May of 2005 which as since spread (twice now) to the liver, possibly pelvis and possibly lungs (they got that info from a Petscan so its the best they have to go with). I have had a sigiostomy (I know I butchered that word but I’m hoping you know what I’m trying to say, removal of some of the lower colon). That was followed by chemo (Folfox), but the cancer came back three months later as a 5-1/2″ cyst in my pelvis which was removed by Dr. Garcia-Aguilar, a great surgeon.  After the second surgery I had radiation along with oral chemo (Xoloda), but it came back four months after the radiation to my liver and lungs. I bet you’ve heard this story a lot.   Day by day I feel healthy, and do a lot (I have a radio show on a  local radio station and have just started a blog for cancer patients to use as a clearing house about various cancer treatments, its so hard to find out what is out there and the veracity of any treatment).  I had to cut my last chemotherapy session short as I couldn’t take this third series of chemotherapy, my body is starting to shut down. Obviously this treatment is not working and the doctors have given me about until the middle of next year to live, but I plan on making it longer than that. Currently I am under Dr. Dunphy’s care, but I am writing to you to see if you are taking on any more patients and what being your patient entails (i.e. how long the treatment lasts, is it all done in Israel, information like that).   My doctor estimated that you charge around $18,000 for this, is that about right? Would you have any payment plans as after two years of this cancer my resources are depleted (I’m sure you’ve heard that one too). BUT, I am a tough old bird (54) and know that I can get the money together somehow and am not in the habit of making  promises I can’t keep.  Do you think there is a chance you can help me? If not is there anyone else you know in the U.S. who could do what you are doing? (I am in Northern California).  Thank you for reading this. Thank you for researching cancer.  Thank you for following a different plan from the normal path to research; because I can vouch that surgery and chemotherapy don’t work too well. Bless you and here’s hoping! Christine Lowry

PS: If you cannot help me as a patient would it be possible for me to write you occasionally so that I can get more information about your research to tell people about you on my blog? I have mentioned you on my blog already (hope you don’t mind!) but I don’t quite understand how this all works, I’m not dumb just no medical background and it would be great if people could understand this better.

Hello there

Saturday in beautiful Guerneville, California, the sun is shining and its nippy outside.   I am so excited at this my first post in my new blog;  my dreams for this blog are large and hopeful.  I am going to write about my  own experiences with cancer (stage IV Colon) and start a dialogue with you to see what is out there in the way of cures; help, education, support, whatever . . . I want to make a place where people can come and tell their stories of healing, or not healing, and find out what treatments work and which don’t. 

Hey Write To Me

I hope that you’ll write to me with your experiences (favorable and unfavorable) with any of the cures out there (including various chemos). 

Treatments

For example today I started out my day by taking CoQ10, Selenium, Ten Mushroom (etc.) . . . all supplements advised by a new doctor I saw last week in San Francisco.    Its nice to take medicine that doesn’t make you feel sick; I call this doctor my ‘new’ doctor because I came to him after telling my ‘old’ doctor to put my chemo on hold as I felt I couldn’t take it any longer.  Thankfully ‘old’ doctor was gracious and gave me my freedom; had to do it though, this was my third series of chemo (plus one series of radiation) that I had been through and this one really got to me, it was Thanksgiving Day when I decided that I was grateful for the chemo but couldn’t take it anymore, my body was starting to shut down and I was vomiting 10 times a day even with my antinausea drugs.  I didn’t know where to go next so I spoke with a friend, Peter Andrews, who is Program Director at the little local radio stationI volunteer at (another thing I am doing as a ‘cure’); Peter had had stage IV cancer 30 years ago and had been ‘cured’ by a doctor in Mill Valley, using nutritional methods plus massages, his diabetes had also been cured, not to return, and he tests for it each year.  Anyway, Peter told me about his doctor (Dr. Michael Gerber, M.D., H.M.D.), who is now in Reno, Nevada, I emailed Dr. Gerber and ended up going to a doctor from the practice Dr. Gerber had in Mill Valley, his name is Daniel Dunphy and he prescribed the supplements I took this morning.   I liked my meeting with him, for one he was with me for over an hour, maybe 75 minutes, describing various methodologies out there for helping with cancer, most of it went over my head and it was definitely too much to take in all at once, but I got the impression that he is excited by his work and there are quite a few options out there. 

Cancer Immunotherapy

He was telling me about a doctor in Israel; Shimon Slavin, M.D.  Dr. Slavin approaches a cure for cancer by training the body to fight its own cancer – using immunotherapy techniques, I won’t say anymore than that because I don’t know exactly how it works, but you can google him and check his ideas out.  I’m excited by the idea of this, it seems to make so much sense, however as its so cutting edge it wouldn’t be intitutional enough to be paid for by insurance, and you know what medical costs are like when you have cancer.  Anyway, there is so much to share, and this is getting a little long, so I will tell you a little more about my experience with Dr. Dunphy in tomorrow’s blog.