View Full Version : Recurrence of TC - Lengthy Post
Hi all,
I'm not sure if I posted this in the right section of this Forum.
My name is Matt, and I live in PA. Way back in September of 1993 I was diagnosed with non-seminoma germ cell tumor of my left testicle. I had just turned fifty, yes 50, years old. I had a few of the classic symptoms like lower back pain starting about one month before I went to my GP. I also started to feel heaviness and a dull throb in my scrotum. It was mildly painful and obvious to me that it was not normal.
I had an ultrasound in late September and I believe the offending testicle was removed on October 02, 1993. The urologist called me a day or two later and told me it was a malignant cancer tumor. He referred me to an oncologist and I met with him a few days after the appointment was made and four days after the oncologist consultation I began chemo. I would go to the hospital very early Monday morning, get pre-meds for about an hour, then Cisplatinum and Etoposide via a IV drip until mid afternoon and then a flushing drip for the remainder of the day and night. Then at six in the morning the next day it would start all over. This went on for five full days and around 5:00 p.m. my wife would come and pick me up.
On one week of the four I would go for out patient chemo and get a large syringe of Bleomycin that typically would cause an allergic reation. I had four sessions of this chemo regimen from early October to my last session in mid January 1994.
I should of added earlier that all of the lymph nodes in my abdomen pretty much appeared to be full of cancer and there were 4 - 5 tumors in each lung about 4 - 5 centimeters in size. After the second chemo treatment all but one or two lung tumors were gone and the CT was indicating the lymph node tumors were no longer active. After the last chemo session all lung tumors were gone and it appeared all that was left in my abdomen was teratoma but they said they couldn't be sure and they recommended a RPLND. I had the surgery in mid February and maybe because of my age, or the extent of my disease, I was in the operating room for eight hours.
I was in ICU for 3 - 4 days and my total stay in the hospital was thirteen (13) days. It really sucked and the surgery had me really debilitated and weakened. I had 33 staples holding me together and I think about one week after my release I had the staples removed. About half came ouit easily but the other half hurt like the dickens. To be frank I was by this time an emotional wreck and could get weepy very easily. My urologist told me this was not all that unusual and called it something like post operative stress. He put me on 10 mg of Lorazepam three times a day. The drug did alleviate all my feelings of fear and depression but the high dosage got me addicted to the drug but that is another story.
Anyway after the surgery and a CT and blood markers I was told that I was cancer free and would be closely monitored with a CT every three months and three blood markers every month. This went on for three years and I actually went to having just a chest X-ray twice a year and the blood tests.
In November of 1996 during a routine chest X-ray the radiologist noticed some material in the lower lobe of my left lung. It was determined to be teratoma and I had a Thorocotomy in December of 1996 where the entire lower left lobe was removed and no further treatment was required.
Now I go forward eleven years to October of 2007 and during my annual urologist visit he tells me the chest X-ray was fine and so were two of the blood markers. However the AFP was quite elevated at 1000. I retested a week later and it was up to 1300. During the rest of October and into November I had a CT of my chest, abdomen, and pelvis, a PET scan of the same areas, more blood work, two visits with my original oncologist, and finally two visits with a ENT surgeon. I had my third AFP blood test in early November and the count was then at 1850.
The CT showed no evidence of any tumor activity in my soft organs but it did detect two 6 mm nodules in my right lung. One at the top of the lung and the other in the middle. But they were so small that my oncologist thought they would be difficult to locate to get a biopsy.
The PET was for the same organs but accidentally part of my neck got scanned and after the films were viewed it was apparent, by the big orange glow, that there were one or more nodules to the left of my Adams Apple and just above the clavicle. My oncologist referred me to an ENT surgeon and he couldn't palpate the neck nodules even though my oncologist was able to locate them. Then the ENT guy had me get a CT of my neck and after that he scheduled me for out patient surgery on December 10 to have them removed.
The surgery went well and my oncologist had me back for a meeting and told me that the pathology report indicated the tumor "was consistent with non-seminoma germ cell cancer". So here I am eleven years after my last incident and now sixty-four (64) years old with TA again. My oncologist was very frank with me and told me he just didn't have the experience to treat a recurrence so long out from the original disease diagnosis and told me he was going to call one of two experts. I'd known about Dr. Einhorn from my first episode but really didn't want to go to Indiana for a consult but then my doctor told me about Dr. Bosl at MSKCC and that appealed to me more as it is much closer and one of my friends who lives in NJ will drive me to Manhattan once I get to NJ.
I have an appointment to see Dr. Bosl next Thursday January 03 and am very anxiopus to see him to learn what he has to say about my current condition. I should mention that I had an AFP blood test after the neck tumor was removed and the number had dropped to 1031 which is a reduction of a little over 800 points since my third blood test.
I'm sorry to be so long winded but was wondering if any Forum members have had a recurrence of their original TA ten or more years out from the original diagnosis? To be frank I'm very concerned about how well I will fare with any chemo now at 64 years old. I have no apparent signs of being sick and actually feel great. If I'd not had my annual urologist visit I would not have even learned that something was wrong. Does anyone know what chemo protocols are being recommended for recurrences ten or more years after the original disease?
It is a shame it has taken me over two months to get the neck nodules removed and it will be almost three months before I see Dr. Bosl. I'm ready for whatever is ahead of me but would like to get going while I'm still as strong and healthy as I feel right now. I love to fly fish and know I'll need a few months to recover my weight and strengh from chemo if it is anything like the protocol I had back in 1992 - 1994.
If anyone ever wants to chat with me about their disease or anyone who has recently been diagnosed or is wondering about chemotherapy or the RPLND you may email me or PM me and I'll be glad to try and answer your questions.
Flyman,
Welcome, and I am so sorry that after all you went through you are dealing with this again. Good thing the PET "accidentally" went up too high. What was the make up of your original tumor and what was the node in your neck? My not-a-doctor thought is that a recurrance is a recurrance, no matter how long in between. http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf gives the current guidelines. I'm glad you're going to a center of excellence, you'll be in good hands.
Hi Karen,
You asked "What was the make up of your original tumor and what was the node in your neck?"
I neglected to mention in my initial post that I was a Stage III patient with significant tumor activity in abdominal and chest lymph nodes and numerous tumors in each lung. I often wonder why it took me so long to experience any sypmtoms at all. If I'd had some indicators earlier on I might have been able to "catch" the disease at Stage I or II.
I know it was a non-seminoma germ cell tumor but my memory seems to make me think it may have been of mixed origin. I asked to see the pathology report of the neck tumor but my oncologist didn't have it at hand which was annoying. However the ENT surgeon told me the pathologist said the cell structure indicated that it was consistent with non-seminoma germ cell TC.
You can imagine how shocked I was on October 10 to learn my AFP was so elevated. My oncologist has two opinions on this; either my immune system had been able to defeat the cancer cells from growing for all these years and all of a sudden just didn't have the power to do so any longer, or the cancer cells have been growing ever so slowly for the last eleven years and sometime after my 2006 checkup and the one in October of 2007 the cells became large enough to be noticed on the PET scan. The mass was only 1.5 centimeters which is approximately 5/8" in size.
My AFP went down to 1031 after the removal of the neck nodules. IMHO I think I should have another AFP test done to see if the number is now even lower. If the number is a couple of hundred points less it is conceivable that the bulk of the disease was in the neck nodules and maybe I could beat it with localized radiation to that site or a minimum of chemotherapy.
Welcome, Flyman, and best wishes as you continue a renewed fight. I'm guessing that unless there's a relevant clinical trial available, options will be combination chemotherapy including high-dose carboplatin, VeIP (vinblastine/ifosfamide/cisplatin), or TIP (paclitaxel/ifosfamide/cisplatin). I'll be very interested to learn what your doctors recommend.
Hi Paul,
Thanks for sharing your thoughts! I'm pleased that I located this web site. When I was ill back in 1993 I didn't even own computer and there was very little information available to me. Now it is entirely different and I think having a web site where guys with similiar experiences can share them is tremendously supportive.
I'll post new data as it is available. I'm really looking forward to meeting with Dr. Bosl next Thursday considering his reputation in TC.
Jeez, Matt, every time we kind of get comfortable with this disease someone posts a zinger and your's certainly qualifies. I know you are going to see Bosl but don't shut the door on Einhorn. Maybe it might be worth an email to him to see if he has treated others who have found themselves at your age in your situation. Dianne
Would Dr. Einhorn entertain an email inquiry from a layman with TC?
lynjames
12-30-07, 08:47 PM
Flyman,
I emailed Dr. Einhorn regarding Darrell's case, and he emailed us back the same day. Sorry you are having to go through this again. I'm glad you found this site, the people here have helped us tremendously. I'll be praying for you and the next step.
Lyn
It is quite certain (in your case) that MSKCC will want to do their own pathology on the lesion recently removed.
If you want to buy some time, you should try to take your pathology slides with you when you are going to visit the dr. at MSKCC.
Because you originally had some leftover (mature) teratoma, chances are that this will have caused your current problem.
Because of the elevated AFP one would assume a non-seminoma (germ) type cell, but teratoma can also cause a malignant transformation which consists of a non-germ cell type.
If you want to do some research on your own it's important to know that a late recurrence related to the original TC is managed differently than what is commonly called TC2
(TC2 = testicular cancer in the other testicle.)
Would Dr. Einhorn entertain an email inquiry from a layman with TC?
He would certainly respond (where does he get the time?).
If I was you I would wait for the visit of dr. Blossl. (only a few days)
You will probably get quite some answers.
This will make it easier to better present your case also to Dr. Einhorn.
Studies done on late relapses (non TC2) (that I have read some years ago!) suggest that chemo isn't very effective a lot of times.
This is a question that is worth asking (in your case) when you are at MSKCC.
Regards,
David
Flyman:
64? When Paul joined a few months ago I thought he was about as far out on the bell curve as we would ever see.
You'll be in great hands at Sloan, these guys are masters when it comes to treating TC and there's no reason to think that they won't be able help you.
There are several chemo mixes that might be appropriate (Scott mentioned the most likely ones) but it will be very interesting to see what Sloan recommends. When you go to Sloan be ready to spend the whole day. After you consult they eill most likely send you for scans.
It's great to see that markers number come down.
jaybird
12-31-07, 07:09 AM
Flyman-
Sorry to hear your news. It sounds like you're moving in the right direction. I'm glad to hear your doctor has referred you to a specialist. If I were you I would contact Dr. Einhorn Simply b/c this is a rare case and the more opinions you get the better.
FYI - Flyfishing was my best therepy after my treatments.
dbo,
My oncologist is sending the slides of the recent tumor pathology to MSKCC along with all of my recent blood work reports. I'm going to pick up a DVD of my CT and PET scans on Wednesday to bring along with me.
David1969
12-31-07, 08:48 AM
Flyma,
Sorry to here about your recurrence. I also had a recurrence this year and I was treated by Dr. Einhorn. I am currently back on surveilance. Dr. Einhorn would certainly entertain an email from you, that is how I got in contact with him. If you need his email address or other contact details please feel free to drop me a pm or message on here and I will forward them to you.
Keep posititve.
Dave
Studies done on late relapses (non TC2) (that I have read some years ago!) suggest that chemo isn't very effective a lot of times.
This is a question that is worth asking (in your case) when you are at MSKCC.I'll be glad to hear what Dr. Bosl (and, I hope, Dr. Einhorn) have to say. Flyman, your case certainly reinforces the point that we all need life-long followup after treatment.
Here are some articles about late recurrence, which say that surgery is preferred treatment, when feasible. http://jco.ascopubs.org/cgi/content/abstract/13/5/1170
http://jnci.oxfordjournals.org/cgi/content/full/90/22/1692
http://patient.cancerconsultants.com/CancerNews.aspx?DocumentId=37936
Flyman:
One thing you really need to stay on top of is to make sure this is a recurrance. My concern is that it may be extra-gonadal germ cell cancer which is still TC but needs to be treated more aggressively.
dadmo,
I guess you raise a viable point but my primary oncologist, who treated me fourteen years ago, did not indicate that he thought a had new TC. The pathology report stated the tissue "is consistent with prior non seminoma germ cell tumor".
I'll ask the Dr. at MSKCC on Thursday when I meet with him.
I love this forum for it's community and family feel and I love to just give comfort but sometimes we need to get really serious and if you were my father ( :D ) I would want you to make sure it's a recurrance.
I went with MSKCC because it is much closer for me to get to than to consider driving to Indiana University if Dr. Einhorn wanted to see me in person. Indiana U is at least 600 miles away while MSKCC is only about 200 miles and I can go up and back in the same day. I can always ask my oncologist to call Dr. Einhorn to see what his course of treatment would be once he has the particulars of my case.
Hey watch it! Your no spring chicken either!
Sloan is a great place but certainly consult with IU. I don't think IU is any better it's just that if I went to Einhorn first I would check with Motzer (my sons onc.) at Sloan just to be certain.
Sorry I couldn't help myself. I hope your not really offended?? My concern about your feelings kept me from saying anything about getting viagra and then going to the sperm bank. :rolleyes:
My concern about your feelings kept me from saying anything about getting viagra and then going to the sperm bank. :rolleyes:
I tried one of those once. It got caught in my throat. I had a stiff neck for hours. :D
I had a stiff neck for hours. :DBa-dum-pum! He's here all year, folks! :cool:
Hey,
No, I'm not offended at all. I like a little good natured bantering as much as the next guy. Besides with what might be in front of me I need all the laughs I can get. I retired in April of 2005 mostly because I knew what it was like to be really ill. Some of my friends thought I should of worked longer but I'd had enough and have had three great years of trout fishing during the week when it is the least crowded.
I tried one of those once. It got caught in my throat. I had a stiff neck for hours. :D
Mark, Mark, Mark.....If you experience a stiff neck lasting more than 4 hours, you should seek medical attention. :cool:
Weclome to the dysfunctional family, Flyman!
Mark, Mark, Mark.....If you experience a stiff neck lasting more than 4 hours, you should seek medical attention. :cool:
Weclome to the dysfunctional family, Flyman!
Flyman,
Let me echo, welcome. We actually do try to help as well and we'll be there for any support you need before, during or after your treatment. We hope humor helps lighten the load for you as well. Please forgive me, but posts like this are like getting a nice hit on the line to me.
Karen,
They've always attributed those long lasting kinks to me just being kinky :p .
Much Love and Happy New Year All,
Mark
My oncologist is sending the slides of the recent tumor pathology to MSKCC along with all of my recent blood work reports.
I'm going to pick up a DVD of my CT and PET scans on Wednesday to bring along with me.
That is great, good luck with the appointment.
Here are some articles about late recurrence, which say that surgery is preferred treatment, when feasible.
Yes, I think it's quite safe to say that whatever treatment plan MSKCC will offer, that you should expect surgery to be a integral part of it.
Regards,
David
Hi Flyman,
How weird about the case!! Every time I vist my urologist, he feels all around my clavicles and neck to the point that it hurts!
Evidently, that is a semi-common recurrance point for tc. So note to all....have your docs check there and be aware of it, OK?
We could all use a 2008 with NO relapses, recurrances, or missed appointments (Right Mark??!?!?!)
Let's get 2008 off to a good start...and Flyman..let me know when you are at Sloan--I travel to NYC monthly.
We could all use a 2008 with NO relapses, recurrances, or missed appointments (Right Mark??!?!?!)
Let's get 2008 off to a good start...
Made my apointments today :o . And I'm definately with you on the other two Brother!
I'm going to Sloan tomorrow. They called this morning so I could pre-register and answer most of the questions on the phone. They told me they have received all of the slides from my recent neck surgery where the 1.3 cm nodule was removed plus the recent blood test slides.
I would only consider being treated at MSKCC if my oncologist has never administered whatever chemotherapy regimen is recommended for me. I've now actually considered getting an opinion from Dr. Einhorn. I'd feel much better if he too selects the same treatment as MSKCC.
veryworriedmom
01-02-08, 08:58 PM
Flyman, Dr. Einhorn was very responsive to us by email. He is worth contacting.What I find interesting is that when my son had his first Ct scan there was an enlarged pretracheal lymph node and the urologist said nothing to worry about as TC would progress in a step wise fashion up through the pelvic region to the lungs. Yet there have been several postings where I have read the re ocurance is in the neck region without any activity showing in the other regions first. We all need to pay attention to the enlarged nodes even if they dont follow the textbook progression. Hope everything goes well for you at Sloan tomorrow. Marion
Flyman:
While both are top rate facilities they may have different opinions on how best to cure you. As an example IU's standard treatment for non-seminoma is 3xBEP and Sloan used 4xEP. What you really want IU to confirm is the diagnosis.
Hi Flyman,
Just catching up on your thread. Sorry to hear you're back fighting this thing again. Best of luck at Sloan today.
I tried one of those once. It got caught in my throat. I had a stiff neck for hours. :D
Ha! Ha! Good one Mark-
Thanks for the laugh this morning :D
Flyman, welcome to the forum-
I wish I had something to add that would be helpful.
My son has had a "lump" in the side of his neck no one else ever seems to notice except me. I only see it when he starts talking, eating, or moves certain ways. I have pointed this out to his doctors several times over a period of many months, but when they try to find it they don't feel anything.
Now I'm really wondering, since you say they couldn't feel yours and I'm going to discuss this with his doctor again. Thank you.
I certainly hope surgical removal of the node will be all that is necessary for you. I'm unclear on the time between AFP tests since the surgery?? Possibly it is still going down?
Good luck and let us know what you find out.
Tammy
NOTE: I just went back and re-read that your surgery was December 10th. Sorry about that.
I had a 2:00 p.m. appointment to meet with Dr. Bosl but got to NYC early just in case there may have been traffic issues. Even though I pre-registered by phone on Wednesday it took another twenty minutes at MKS registration desk and then another twenty minutes in Dr. Bosl's area. It was so crowded I knew he would be running late and sure enough it was 3:00 when I finally went in.
Based on the pathology slides of my neck surgery he told me that my disease is a late relapse of the original TC of 1993. It has had a very slow progression and it is not critical to start treatment immediately. He was somewhat disappointed that my most recent CT scan and AFP test was over a month old. I felt that too and voiced my thoughts with my wife prior to going to NYC. I've been very proactive to date with my illness and would of thought my oncologist in PA would of ordered a new CT and AFP test.
Dr. Bosl felt that since I had the neck nodules and the two small, 6 mm, nodules in my right lung it is obviously not a single site relapse. He did indicate though that when he receives the result of a new AFP if the number continues to go down he would recommend surveillance with blood work every few weeks.
However if the number stays static, at the last level of 1031, and the CT of the neck shows evidence of remaining disease in my lymph nodes he would recommend a complete neck resection followed with salvage chemotherapy using paclitaxel, ifosfamide, and cisplatin. Four sessions each about a month apart with each session lasting at least five days. He said I'd be spending a lot of time in the hospital. I asked him what he meant and he said that the toxicity of the drugs could really wipe out my white blood cells and immune system and I'm assuming my oncologist wouldn't want me to go home for fear of getting some bacteria from other people and would feel I was safer in the hospital. Further side effects will be neuropathy of my fingers and toes, equal to, or worse than, it was during my first chemotherapy treatment fourteen years ago. This really scares me as it took a couple of years to go away the first time. I considered myself fortunate then because I'd been told it might never go away. It is just a terrible sensation to constantly have numb fingers and toes. :( :( :(
He told me my age could be a significant factor in how well I do with this chemotherapy regimen. That is why he isn't recommending an immediate start of the treatment. He wants new blood work, a new CT of my neck, chest, abdomen, and pelvis. He even wants an ultrasound of the remaining testicle to rule out the possibility of a new TC.
Dr. Bosl will to be in communication with my oncologist and will also be reviewing the results of my new tests. I'm going to call my oncologist within the next few minutes to tell him of my visit with Dr. Bosl and ask him to call in the order for new blood work today and to set up an appointment for a CT as soon as possible.
I asked him if he felt my oncology center could administer this drug regimen. He said administering the drug is relatively easy. What is important is are they going to possess the expertise to take care of me between the treatments when my body starts to receive, and react, to the ravages of the drugs. To tell you the truth I'm pretty upset about all of this and more than a little frightened. There was absolutely nothing even remotely pleasant about the experience fourteen years ago and at sixty four years old this is pretty much the last thing in the world I wanted to be facing.
I guess though it could be worse in that I might have acute luekemia or liver cancer and have a bleak prognosis. I just have to get through the new tests and pray that the AFP is getting lower. If the tests indicate the treatment is required then I'll need to keep a stiff upper lip and hope I have the reserves to get through the next four months.
I took a break from this update and called my onocology medical secretary and told her about yesterday's visit to MSKCC and asked her to speak to my oncologist and have him order blood work to be performed today and get the CT as early as is possible next week.
Flyman,
Looks like you're going to go through the TIP protocol. I'm a veteran of that one. I finished up April of last year. Make no mistake, it's a tough one, but you should be able to do this out-patient. I only had ~6 months between 4EP before I relapsed again and got hit with the TIP. As you know Chemo effects are cumulative, so given the amount of time you had since last chemo, it may not be too bad for you. I'd imagine the anti-nausea drugs have come a long way since you last treatment as well. Cessamet finally worked for me. I believe Marinol is tha same thing. The Taxol push is a 24 hour push so the first day you'll be in-patient. After that it's just trips to the Chemo Cafe, and then 2 weeks off. They'll be hitting you with Aranesp and Neulasta to keep your blood counts up. Feel free to PM me if you like and I'll fill you in as best I can. You can do this my slightly older Brother. And when you're done I just might bug you to show me how to Fly Fish as I'm just the run of the mill angler.
Much Love,
Mark
David1969
01-04-08, 09:35 AM
Flyma,
I am glad things are moving forward for you. My personal experince (and it is only personal) is sometimes the thought of the treatment is actually worse than the actual treatment!!!!
I think once you have time to consider today's results you will see there is light at the end of the tunnel and you will be able to move forward.
Did you email Dr. Einhorn to see what his views were?
I am sure by the end of 2008 you will be able to look forward and enjoy your life again.
Good Luck.
Dave
Flyman,
Well, that really sucks. :( Mark is right that things have come a ways with meds to keep you more comfy during treatment. I have fingers and toes crossed that your AFP goes down and you can just go on surveillance. Are you still checking with Einhorn, I hope? You are a proven fighter, and you will fight this too. I'm just so sorry that after such a long time of feeling done with the beast you have to face it again. We're here for you, hang tough!
Hi Karen and Dave,
"Are you still checking with Einhorn, I hope?" I would like to but don't really know how to go about it. Should I send him an email defining the highlights and treatments for my initial disease back in 1993 and then fill him in with what I've experienced from October 10, 2007 to the present and ask him what he would recommend?
Would you think it poor form to mention that I'd seen a doctor at MSKCC for a consultation and now wanted his opinion? He might feel like "what am I second fiddle?" I went with MSKCC because it was closer. I was able to drive out, have the consultation, and drive back home in one day at a cost of just $100. If I go to Indianapolis it will likley consume 3 - 4 days and hundreds of dollars.
I did compose an email but didn't send it to him yet. I'd like your opinions in what you think I should say. How about I just ask my oncologist to call him and consult with him? He may often consult with two or more experts before initiating a treatment regimen.
Margaret
01-04-08, 10:07 AM
Flyman, not the news you (or any of us) was hoping for...but I am sure glad you are in the right hands. They will take excellent care of you and take care of this once and for all.
Hugs and prayers,
m
Already Bald
01-04-08, 10:30 AM
I did compose an email but didn't send it to him yet. I'd like your opinions in what you think I should say. How about I just ask my oncologist to call him and consult with him? He may often consult with two or more experts before initiating a treatment regimen.
I say send the email, and ask your locol oncoogist to call him. Also, tell him about your consult at MSKCC and don't worry about hurt feelings. (They won't take offence) they realize that your health is what matters most.
Godspeed,
Joe
lynjames
01-04-08, 10:40 AM
Flyman,
We are so sorry you have to go thru this again, once is more than enough! Please know we are praying for you and remember, being in your sixties isn't old anymore. My mom was in her sixties and she held the world record for her age group in pole vaulting in the senior olympics! You can do this if you have to. We are praying for surveillance for now!
Lyn and Darrell
David1969
01-04-08, 12:09 PM
Flyma,
Send Dr. Einhorn an email with a summary of your case and also tell him what Sloan have recommneded. I have met him a few times now in person and I can guarantee he would not be offended in the least that you are going to Sloan, he has absolutely no ego whatsoever. He will just be happy to advise.
Dave
Flyman:
I'm jumping on the bandwagon on this one. Contact IU and tell them everything. Have your oncologist follow-up and then let Sloan know what IU said. This may not require a trip to IU. The doctor's at Sloan and IU are real pros and will not be insulted and more importantly if they are that's just too damn bad. The best advocate you have when it comes to your health is you.
I just pressed the "Send" button on a lengthy, and thorough, email to Dr. Einhorn. I went over the salient points of my initial disease with all of the dates, surgeries, and treatments. Then I added all of the data I've put together since 10/10/2007 and added everything germane relative to the meeting I had with Dr. Bosl yesterday.
I can't believe I've not gotten a call back from my oncology office yet. It is 2:00 p.m. and I spoke to a medical secretary at 9:30 asking her to relay to my oncologist Dr. Bosl's request that I get an up to date AFP test. I'm calling back right now.
Flyman:
Here's a phone number for Dr. Einhorn 317-274-7929 you will be talking to nurse Jackie Brames.
Well I followed all of your suggestions and this is the complete email I received back from Dr. Einhorn "You are in excellent hands with Dr. Bosl and I would follow his recommendations."
"Sent from Dr. Einhorn's Treo"
What is a Treo? I thought my email was thorough and stated only the facts. If anyone would like to see my email send me a PM and I'll send it to you. I was disappointed at this response thinking I pretty much wasted my time sending a long email. Maybe though I can still have my oncologist give him a call and if Dr. Einhorn didn't like me contacting him directly my Dr. can smooth things out.
On another note I had to get quite vocal with the medical secretaries at my oncology office this afternoon about not hearing from them in over five hours after my original call to get blood work done today. I actually left a strong message on the voice mail and within fifteen minutes they returned my call and I had the blood work completed by 3:15 and I have an appointment for a CT with contrast, followed with an ultrasound of my remaining testicle, next Wednesday at 8:00 a.m.
Margaret
01-04-08, 03:15 PM
Good for you for standing up for yourself...sometimes we just have to take matters into our own hands in regards to appt making and getting results back. I remember calling a nurse after 4 horrible days of waiting for AFP numbers just to be told "well everything is fine, I would have called if the results were bad...did you also want the results if they were good??"
DUHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
Is what I said back....of course I want the good results, and thanks for the stomach pain and sleepless nights my worrying caused. :(
As far as the response you got to your e-mail I would look at that as a good sign that you are in great hands at SK. I know all that work went into sending it, but having two well respected doctors in conflict about treatment can be very difficult on the person getting treatment. No one wants to choose one over the other because this is your life we are talking about and we can't afford to make a bad choice. So I think the fact that two of the best in the world agree on treatment means you are on your way!
Already Bald
01-04-08, 03:19 PM
A Treo is a type of personal Cell Phone, much like a BlackBerry.
That implies to me that the response was directly from Dr. Einhorn, from his private cell phone. Standard procedure, he probably wrote in between patients.
I would't think he was upset with you contacting him directly, he is just a very busy man.
It also tells me that he would treat your case exactly like Dr. Bosl plans to.
That is good, means you don't need to go to IU :)
Actually you are right regarding your comment about having two prominent doctors offering conflicting treatment approaches. I even mentioned that to my friend who drove me to MSK yesterday indicating that my preference was for them both to agree on the same protocol. I'd have really been in a quandry had one suggested one approach and the other suggested something entirely different.
Responses from hand helds are usually short and sweet...thumb fatigue! I take this as a confirmation of Bosl's plan, and I agree that having two great docs agree on a treatment is a very good thing. You definatley didn't waste your time, IMHO, sending the e-mail. He needed all the facts and you gave them.
Margaret
01-04-08, 03:25 PM
Actually you are right regarding your comment about having two prominent doctors offering conflicting treatment approaches. I even mentioned that to my friend who drove me to MSK yesterday indicating that my preference was for them both to agree on the same protocol. I'd have really been in a quandry had one suggested one approach and the other suggested something entirely different.
Honestly, that would be one of my fears. How do you pick when they are both two of the best in the world?? YIKES. So awesome that they both agree!!!
Yes, I'm still glad I sent the email and now after seeing your responses I too feel like he is obviously agreeing with Dr. Bosl's course of action. Now I just need to get the results of the four blood tests I had done today. My oncologist requested three more in addition to the AFP. One was the HCG and the other was one that I'm familiar with but just don't remember the acronym. I asked the nurse what the fourth was and she gave it a name, which I promptly forgot, but it had something to do with liver and kidney functions.
Then get the CT and ultrasound on Wednesday and hopefully have the results to my Dr. and Dr. Bosl by early next week so we can see whatever there is to see and get going on either surveillance, just TIP, or the neck resection with TIP following my surgery recovery.
Hey Flyman,
I'm entering the conversation late, but I did read through your post on the Sloan course of action. They all seemed quite reasonable, and it is great that Bosl was so thorough. Even better is the fact that you got a prompt response from Einhorn concurring with the Sloan opinion. You now know what the road will be like, and you'll be prepared (and in great hands, I might add) to kick the living daylight out of the relapse. Keep at it, and I'll be keeping my eyes peeled for your posts. Best of luck with the scans next week,
If the tests indicate the treatment is required then I'll need to keep a stiff upper lip and hope I have the reserves to get through the next four months.We know you do, and whatever the course, we'll be along with you.
Hey Matt,
Oops, now we All know your name :) . See what I mean about Family?!?!? We're all with you Bro. I think the next (Remission) party should be a fishing theme. Keep us posted! We're All here!
Much Love,
Mark
Matt,
Been thinking of you. Good luck on the CT and US tomorrow. Do you have any news so far? Let us know how you're doing.
Much love,
Mark
Thinking of you Flyman....let us know what you find out.
Best wishes for tomorrow, I'm sending positive thoughts and prayers your way.
To all,
I called my oncologist's office this morning to get the results of last week's AFP blood test. A couple of hours later one of the medical secretaries called me and said "well the new AFP level is down to 162." That is a reduction of 869 points since my December 07, 2007 AFP test and a total of 1677 points since my high of 1839 in mid November. I'm quite pleasantly excited about this new lower AFP.
I hope the excitement is not premature. Dr. Bosl, at MSKCC, told me last week if my AFP level went down at my next test that I would likely be put on surveillance rather than having to start the TIP therapy.
I'm having a CT tomorrow morning of my neck, chest, abdomen, and pelvis both with the contrast you drink and the contrast that is injected. I have an appointment to see my oncologist on Monday to learn of the results of the CT.
Hey Flyman,
This is actually promising news. In the absence of any sources of protein, AFP levels should drop by 50% every week or so. Based on a test date of January 4, it sounds like it's on track. Hopefully it will keep dropping further (just keep in mind that further drops should be less dramatic). Under those circumstances, it is great that Bosl is contemplating surviellance. I'll keep my fingers crossed for you. Best of luck with the scans,
Great news, Matt! Here's hoping you won't need the chemotherapy. I'll be eager to hear what you find out Monday.
Matt,
Good news Man. Keep the good news coming.
Much Love,
Mark
Excellent news on the markers, Matt!!!!! :D :D Good luck with the CT, although I'll bet dadmo's money on clean results (heck, I'll bet my money too). Let us know how the appointment goes Monday!
Matt,
That's excellent news!
With AFP dropping, I'm really hoping you can go on surveillance.
Best wishes for ALL CLEAR on the CT's. I'm still sending lots of positive energy your way.
Take care.
Fish, Karen, Tcleft, Scott, et al,
Hey you all are pretty awesome people! I've only been around a couple of weeks and many of you have PM'ed me with good wishes as well as adding your thoughts to my original thread. Thanks very much for your kind words, prayers, and thoughts. Prayer and faith is very important. I believe that my prayers helped guide the doctors to select the best treatments for me and aided the surgeons in the three surgeries I went through.
Margaret
01-09-08, 08:30 PM
Matt, super news, I hope they get lower every second! :)
Matt,
Attitude is everything, and you've got a strong, positive one. Kick butt, Flyman!
I had my CT of neck, chest, abdomen, and pelis this morning and was surprised at how much faster a full CT is no than it was fourteen years ago. It used to take between 30 - 40 minutes for what I had done but today it took no more than five minutes once they got going.
The ultrasound of the remaining testicle actually took longer than the CT but once it was completed the technician and the radiologist reviewed the ultrasound from back in 1993 and the determination was that both pictures look the same. That is good news and I'll see my oncologist on Monday and hopefully he will recommend surveillance only at this time.
Matt:
That's certainly great news about the scans. Surveillance does seem like a very realistic possibility.
FANTASTIC. Meet you in the Musky soon! :)
Glad to hear the ultrasound looks good.
I was also surprised by the speed of the modern CT scans. When I went for my first on in 2003, it was about 5 minutes and the tech came into the room and said "ok James we're all done" I sat up and stared at her, at which point she repeated herself. I said "you mean done as in I can leave now?" She had never even worked with the older machines. Like you, I was used to laying on the table for 30 - 60 minutes.
When do you get your CT results, Monday? I'm really pulling for all clears.
Wonderful, wonderful. You are a good example of "one step at a time." Surely hope that you will reach your goal. Dianne
Hey fish,
Yes, I see my onc on Monday at 2:45. Will post when I get home.
It used to take between 30 - 40 minutes for what I had done but today it took no more than five minutes once they got going.Makes you wonder what we'll be saying in twenty years. "Remember when chemotherapy was like carpet-bombing instead of precisely targeted missiles?" "Remember when surgery required incisions?"
Makes you wonder what we'll be saying in twenty years. "Remember when chemotherapy was like carpet-bombing instead of precisely targeted missiles?"
This is the focus of most research being done nowadays: targeted therapeutics that should produce little to no undesired side effects.
Flyman, I am sending good vibes your way so you'll receive great news on Monday.
greg_oz
01-10-08, 06:41 PM
This is great news Fly-Matt :)
I agree about the CT scan speed. I had my first one in ~5 years a couple weeks ago. At the end, I almost asked the tech if he was sure he did the full scan!
Another positive: one could reason that the radiation we are exposed to in the scans is less also. Not sure about that though.
:) I had a CT last Thursday of neck, chest, abdomen, and pelvis and saw my onc yesterday to get the results. It was a great report and the radiologist report indicated that there was no evidence of any nodules or tumor activity in my neck (where I'd had a 1.5 cm nodule removed on 12/10/07)
Dr. Bosl called my onc last week and said if there was evidence of affected nodes still remaining in my neck he would want me to have neck surgery at MSKCC with his neck and chest team. Something I don't even want to consider unless it is absolutely necessary.
My onc is cautiously optimistic about my condition and I'm going to have another AFP done this Friday and then again the following Friday. Hopefully there will be continued reduction in the AFP but am wondering what will be indicated if it does not get to normal levels? :)
:) I had a CT last Thursday of neck, chest, abdomen, and pelvis and saw my onc yesterday to get the results. It was a great report and the radiologist report indicated that there was no evidence of any nodules or tumor activity in my neck (where I'd had a 1.5 cm nodule removed on 12/10/07)
Dr. Bosl called my onc last week and said if there was evidence of affected nodes still remaining in my neck he would want me to have neck surgery at MSKCC with his neck and chest team. Something I don't even want to consider unless it is absolutely necessary.
My onc is cautiously optimistic about my condition and I'm going to have another AFP done this Friday and then again the following Friday. Hopefully there will be continued reduction in the AFP but am wondering what will be indicated if it does not get to normal levels? :)
Very Cool Matt! The fish don't stand a chance! :cool:
Matt:
Let's all just be optomistic and hope the AFP keeps heading down. If it dosen't further treatment may be required.
Hey Matt,
Everything sounds great so far. I'll keep my fingers crossed that your AFP continues its decline.
Margaret
01-16-08, 07:31 AM
Praying for LOW AFP numbers for you!
Let's do the AFP limbo dance "how low can you go" cha cha :p
Hi all,
I called my onc this morning to learn the results of my most recent AFP blood work. The level is now 57.0 :) :) The AFP count went down 105 points in two weeks. Praise to God for His help in getting me on the road to good health again. My next AFP test is on February 01 and based on the results of the reduction of 974 points since early December I think it is within the realm of possibility that I could be at a normal level.
Thank you all for you posts and support.
This is fantastic! It's definitely worth celebrating!
WOOOOOOOOOOOO HOOOOOOOOOOOO !!!!!!!!!!!!!!!!!!!
Let's go Fishin!!!!!!!!!!
Absolutely fantastic!!!
I love reading good news. Keep it coming.
Beautiful! Happy to see your good news Flyman!
What excellent news, Flyman! HOORAY!
Margaret
01-23-08, 09:00 PM
praise God indeed.
Doing the happy dance for you!!!
Yes!!!!!!! Great news, Flyman!!!
BenEda2
01-25-08, 11:49 PM
Awesome news!!!!
That is what we like to hear!
Best,
Ben
At the time of my last update on this forum my AFP was 57 and I was very pleased. Well I had my latest blood work performed about 2 1/2 weeks after the prior and the onc nurse just called and told me my AFP is now 12! :) :)
She told me normal is 0 - 16 so I'm within the limits of "normal". I see my onc on 2/18 and I believe he is going to put me on surveilance and get blood work done once a month with a CT of my neck, chest, abdomen, and pelvis every quarter for the first year and then hopefully blood work quarterly with a bi annual CT scan.
Hey, do I sound happy!! This is a great Valentine's Day present to my wife.
Thanks to all for your support.
Matt
Margaret
02-13-08, 02:30 PM
I am so happy for you Matt. A happy valentine's day indeed!
Fish On (http://www.flyfishingameliaisland.com/graphics/sunset-fly-fishing.jpg) Flyman. Way cool!
Super news, Matt! Happy Valentine's Day to you and your wife!
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