November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
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This is where you stick random tidbits of information about yourself.
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Brain Tumor History And Other Rants
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Thursday, March 13, 2003
In the near future I will be posting what my first round of chemo has felt like. The following is a transcription of a doctor's appointment where my neuro-oncologist explained my plan for chemo:
I went over your slides from 1999 and from your most recent tumor. The tumor from 1999 was a pure low grade Oligodendroglioma (these tumors arise from Oligodendrocytes, a type of supportive brain tissue. They most frequently occur in young and middle-aged adults but are also found in children. Pure Oligodendroglimos are rare. Mixed gliomas, tumors containing both Oligodendrocytes and Astrocytes, are far more common). The tumor now is the same tumor as in 1999, but it is now more aggressive. It is more cellular, and there is more stuff/density in there. There is mytosis, cells are clearly dividing. Special stains can quantify what proportion of the cells are dividing. When people argue whether the tumor is low grade or high grade, they look at the MIB 1 number to see if it is greater or less than 10%. If it is Greater than 10% the tumor is more aggressive. Your tumor is around 15%, resulting in more than 1 out of 10 cells are dividing. Special stains still show that it has this neuro nerve still. So we would still call it a Ganglioglioneurcytoma (formed from ganglia type nerve cells). The way the cells look more irregular, more unusual, more dividing, we add the label Anaplastic or malignant. The purest using conventional statements would call it Anaplastic-Oligodendroglioma. We would call it an Anaplastic-Ganglioglioneurocytoma. There are more institutions using this nomenclature now. It doesn’t bother me either way. The fact is that it is a malignant type process. So just putting you on something simple like (some drug name inaudible) is not going to be sufficient. I have arrangements still to go for a second pathological opinion. But having seen it under the microscope I am sure they are going to agree that this is an Anaplastic tumor. If you remember we talked about some options. We expect the report to be an Oligodendroglioma tumor. We know a lot about Oligo tumors. The oligo tumors are more responsive to chemo treatment, so much so that we actually are treating newly diagnosed Oligo’s with chemo with the intent of avoiding radiation therapy. You are a newly diagnosed because you are previously untreated outside of surgery. We know we can do it because doctors have been doing it at major centers in North America for about 8 years now. Nobody’s conducted a randomized trial where if you say you treat half the people with this intensive package of chemotherapy w/out radiation as opposed to giving radiation with Tamadar (a lesser chemo drug used in conjunction with radiation), whether 15 years from now will one group have a better survival rate than the other group. Will one group have a better quality of survival? Nobody’s done that because there’s no where near the time. We are still trying to establish things.
There is now question that if you go to a good majority of brain tumor centers in this country, centers that focus on this, they would say at this point you need to get radiation therapy. Some would say radiation therapy with Tamadar. Others might say the old fashion way. Use the old fashioned, that is proved in the literature (the real purest) use PCB (Procarbazine)(the drug that Tamadar is replacing). Some would say the PCB then the radiation. There is a study that is being conducted; we don’t know the results yet. Where malignant Anaplastic Oligodendrogliomas like yours, where you would be eligible because you never had chemo. ½ are getting radiation followed with PCB. The other ½ PCB first and then the radiation. It looks as though there isn’t going to be a major difference. What they didn’t do is ask if getting PCB followed by radiation therapy is better than radiation alone. They decided that the data was sufficiently strong for chemo therapy, that they should all get chemo therapy. So I don’t think it is terribly exciting thing. The only issue is if you get chemo therapy first you leave your options open as to whether you go with radiation afterwards. After 3-4 months of chemo therapy you can go with radiation, or high doss of chemo and stem cell rescue. One group of people say you should go with radiation therapy followed by Tamadar or with Tamadar. Others might say although the study isn’t done, said PCB first then the Tamadar. What we have been doing is using a more aggressive approach that is to go with Carboplatin and Tamador rather than the PCB for 4 months / 4 cycles. Then after that hit you with stem cell transplant rescue. It is not that you buy into a whole strategy / package where if you start this you must go do that. What we do is give the Carboplatin and Tamador for four cycles / four months. Then we look at the scans and say ok should we go through the stem cell cycle for one big bang cycle or should we go with radiation and call it quits. Or should we go with or we have done with some patients that have residual tumor let’s go with radiation and an oral simple Tamador (chemo drug). So there are a lot of options and by delaying the radiation you keep the options open. There are no questions that chemo therapy approach upfront is more labor intensive and can wind you up in the hospital. Many of the patients haven’t. Wouldn’t you know we had an adult in his 30s and a girl at 17 start 3 weeks ago. And despite telling them how people seemed to sail through marvelously. Both of them winded up in the hospital for about a week. With fever and low white blood count they weren’t particularly sick. The 17 year old spent the week being bored in the hospital. So those things can happen. It is more labor intensive. You don’t need to make this decision today. What I want you to do is meet with the radiation department. Dr. Donahue. I think you need to meet with her to discuss what the risks are to you cognitively, intellectually, functionally of radiation therapy. I think you need to hear that to make a decision, about whether you want to try to see if you can avoid the radiation therapy.
Let me tell you what my recommendation is. And unless Dr. Donahue can really turn around and say that this is such tiny area and a tight field that we can give you a tiny focus of radiation therapy we can spare damage to the other hemisphere. You don’t have to worry about intellectual damage, unless she can convince you of that. My recommendation would be to go with the chemo therapy dose with Tamadar and Carboplatin for 4 cycles. We looked at the post-op MRI on Friday we do believe there is some residual tumor he wasn’t able to get some of the tumor. So that flair is some tumor still left. So we will be able to see how that responds to 4 cycles of treatment. And then we can make the decision as to if we want to go through with the big bang one. And by this time, I will give you the numbers of some young people that you can talk to find out what it was like to go through that. And you can help formulate your own decision because there is no right answer. As much as I am supportive of the concept of trying to avoid radiation, I do it I have been involved in developing it. So I can be said to be biased. But I do recognize that there is no absolute right or wrong answer. Yes it would be wrong for you to turn around and leave and say see you in 6 months. That would be wrong. This thing decided to grow and even though it took 3 years to grow. It is not going to take 3 years to grow back now. There is residual stuff there. It is clearly a malignant tumor now. It is not the most malignant tumor. If you read in the books of the horror stories of glioblastoma (grade 4 tumor). Tumors can transform eventually to become that malignant. That is why I want to treat it aggressively. So my preference always it to keep your options open, keep your doors open. Go with intensive chemo therapy with for 4 cycles. Avoid the PCB because although it is easier to give it is more nickling cumulative toxic. So I would go with the Tamadar and Carboplatin and as I said we could sit down with the scans after that and make a decision to go with stem cell or with radiation therapy. I even have a couple patients a 27 year old patient who had a very infiltrated Anaplastic Oligoastrocytoma which was spreading through both frontal lobes. There was no way in hell she was going to go through radiation therapy; it would have blown her out of the water. So she went through Tamadar Carboplatin, but for various reasons that don’t apply to you, she had a totally unrelated blood disorder. Which might have been adverse to going through stem cell transplant, so that wasn’t a risk of going through. So basically after 4 cycles of Tamadar Carbo, she just went on oral Tamazar and all medicines without hair loss she goes to work. And she has been on that stuff for the past 2 years and she has no sign of the tumor growing. So that is another option to avoid the radiation. In your case I don’t think it is necessary. It is in the non-dominant front. It is very small I think it can be gotten with a very small focused radiation something we don’t have here something called I M R T Intensity modulated radiation therapy. This is the newest thing in focusing we will be having this in the next few months we were supposed to have it for the past year now. Dr. Donahue will be very honest with you she will pre-empt it if she feels you could benefit from it she will say this could really be treated with IMRT radiation, but we don’t have it. I have a colleague in Long Branch that has state of the art radiation. Radiation is 5 days a week for 6 weeks it which is a possibility, but we are not there yet. The first thing you need to do is see Dr. Donahue. Tell her you were referred from Dr. Finlay 212-263-5055. She will receive an email from me on the subject.
In summary this is clearly an Anaplastic tumor Anaplasic Oligodendroglioa. They tend to be really sensitive to chemo therapy. That is why there is this new strategy to try to cure them without the need to resorting to radiation. The other advantage is in case this damn thing did recur and became a higher grade. At least you haven’t shot your wad so to speak and you have your radiation therapy sitting out there as a potential if it became more malignant. Once you have radiation and you fail you can not be re-radiated with an adequate dose again short of getting a little focused gamma knife. So there are advantages in delaying radiation. But again if you opt to go with the chemo therapy first as I recommend the decision is still there open for you to get radiation therapy or transplant therapy or even simpler low dose chemo after that. The drugs as I mentioned Carboplatin Tamadar are not experimental drugs they are well established. During the first four months it is mainly labor intensive. The blood counts drop. The first 5 Days you do feel fatigued. Do you remember I told you it is given as 5 days of pills, and the first 2 days you come to the clinic to get chemo therapy through the vein. And I wouldn’t put it in a catheter you have good veins. The risk of infection is slight, but it can happen most of the time people get through the first cycle with no problem but we just had 2 patients that didn’t. We just checked with the pharmacist over our past batch we just had the 2 patients end up in the hospital with low white blood cell counts. We were very surprised to see that. They weren’t desperately sick or anything it was actually pretty boring for them. They needed platelet transfusions. Those are given in the clinic here. You may need to come to the clinic 2 to 3 times a week. We are not in a major emergency to start this and then we need to sit and talk this week or next week see Dr. Donahue then we can sit and talk. Then we can finalize it. My recommendation is to go with the Tamadar. If your decision is you are ready to go for it. We give you plastic jugs to collect your urine for 48 hours. Bring in jugs Monday morning we put an IV in calculate the dosage here you are here for 4-6 hours first day. Collect 12 hours of urine. You also take pills of Tamadar for the first 5 days you get anti-nausea pills for at home. If you don’t react well to it we will give you some fluids extra strong anti nausea pills but it is not usually necessary. And then you will come back a week later for blood counts. We will talk more in detail about that if you decide to do that. In order to minimize the affect on the blood counts, we teach you to give a shot under the skin of a medicine that is a natural growth factor (not a drug) that your body makes naturally, just not enough. It’s called GCSM you take a shot of that each day and it stimulates the white cells to recover faster. That has revolutionized the treatment of cancer recovery it doesn’t prevent a drop in white cells it just helps them recover faster. I don’t know if you are freaked out about giving yourself a shot, it’s quite simple the nurses teach you how to do it. It’s just under the skin. We also have a growth factor that we use that can stimulate the platelets to recover faster also. That’s once a day as well. The growth factors we give you reduce the side effects. It’s a labor intensive regimen. If you are feeling up to going back to work no one is going to stop you. Especially that first week you will be pretty tired and nauseated, but we will give you strong anti-nausea pills. But again we have treated about 25 people with this regimen with Anaplastic (more with Glioblastoma). We see people with big enhancing mass’s that shrink down. We only have to do a minimum on you not too much of a job. Again it is a lot to throw at you. I really think you should talk to the radiation department because it is a very standard approach that will be offered to you. Going with the radiation therapy, along with the oral Tamadar which will be far better tolerated. I can’t tell you which one is better. The only issue is what are the risks in the radiation therapy with affecting your attention, concentration, focusing and performance. You need to hear it from the horses mouth the radiation therapist. If your time is more of your own in terms of when you show up on your own. The second or 3rd week you will show up for a blood test and maybe a transfusion, which will take 4 hours of the day. The first 2 days of the cycle you need someone to come with you. If you are feeling ok come in on your own. If you are having a transfusion you can come in on your own. If you get started with cycle one first week of March, April, May, June. Then the option is to do radiation therapy 5 days a week for 6 weeks or stem cell for 6 weeks with 3 weeks in the hospital and 3 weeks out to recover. Either way it will be 6 weeks June July, for sure no reason you shouldn’t be back around August. You have a lot on your plate you have a tumor you want to try to get it right the first time. I think it would be best to plan not to go to work for first four months. If the decision is to get radiation therapy rather than stem cell transplant I think you managed to figure out that you could get radiation and indeed go to work, although radiation is a drag.
For chemo you would come here for the first 2 days. You would give Me Tamadar morning and evening Monday Tuesday Wednesday Thursday and Friday. Pushing yourself to drink fluids and would stay in touch with me to prescribe strong anti-nausea pills if you needed them. Then they would see me the following Tuesday in the clinic. If you are not feeling crappy they might not see you until the following Friday. The counts don’t drop immediately they take about 7-10 days to drop. By that following Monday or Tuesday. I bet you would be up for your first blood transfusion. It is a bag, which we won’t know until you get your first blood count. We could work with you to locate a local lab. The problem there is they usually take a day to get the results here it takes 5 minutes. But we will try to use the lab see how it works. We must have the results by the end of the day to see if you need to come in for a platelet transfusion. Platelets are given in about 15 minutes but it takes an hour to order them. Red cells take longer to get a cross-match about 3 hours. Platelets take longer. You wouldn’t have enough blood to donate to yourself. Chemo is done for in those 5 – 7 days. The pills you take are Tamadar for 5 days, IV is Carboplatin for 2 days. After those 5 days you wait for the affects to kick in, low white or red blood cells, hemoglobin, platelets. Then you recover for about 2-3 weeks and then we repeat again. 2 days of Carbo, 5 days of Tamadar. This is the highest treatment. Highest is always the best especially for a chemo sensitive tumor like yours and we can alter it. I certainly have people that have been through this treatment that are 4 years out without recurrence. What are the chances we can cure this? I can tell you this you are a young guy and have at least a 50% chance of being around without progression of the disease 7 years from now. Now that’s fine if you want to live for 7 years and not if you don’t. This is with radiation therapy. We got to do our best. I don’t know what the expectations are if this is going to be lower with a more intensive approach. I am recommending the more intensive approach. But you are an adult you have to decide if you want to this. It is not a matter that I have the final say here. Talk with Radiation, your father, whoever else you want to discuss this with. If you come to me and say I would rather go with the radiation therapy right now, with a simple low dose Tamadar. I would support you because I can’t tell you I don’t have hard data to tell you otherwise. The last thing I want to lay this on you that is rubble. I have been trained for 30 years. So I have given my recommendation. But you are an adult you are entitled to your opinion. I would respect if you said you wanted to just do radiation. And I would treat you for it. Think of it as 2 packages the 4 cycles and based on it’s response to chemo do we want to do stem cell or radiation with Tamadar.
12:22 PM
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