Letters
to Sue
and her answers 2
updated:2000.06.29
and her answers 2
updated:2000.06.29
|
Letters
to Sue
and her answers 2 updated:2000.06.29 |
| I do have my opinion - we are what we eat. I do trink Lapacho tea because
someones are telling that it is boosting our immune system. Whose are "someones"
- I have used the Internet as an source of information in this matter. Lapacho
tea have a long history. They say that it has been discovered by American
Indians thousands of years ago. Even so I am not expecting any miracle.
But I have to tell you, I believe that it does make me feel well. I do also
eat local berries. Especially there is one local berry which contains vitamines
in many kind. People are telling that it is good to eat those berries. Local
wild berries contains remarkable amount of good ingredients because of the
northern summer. Summertime is short and then we have lot of sunlight. Only
one piece of very small local berry ( it does not have english name because
it is located only in Scandinavia) - size like a bean - has same amount
of C-vitamin as seven oranges. It also contains many other more important
vitamines and other things. A tea spone of this berryjuice in a day is my
dose. This is only my intuitive comprehension - combination of Lapacho tea and northern berries are good for my health. On the other hand I have information that probably half of thymoma patients are a live after a five years of the note of this illness. When cancer illness is concerned this means that thymoma prognosis is relatively good. Pessimistic part of me is yelling - it is the very same that what I do drink! Positive me is telling that food is important for all of us - take a look what you eat and drink! I do drink Lapacho tea becouse I have a wich to spend as much time as possible with our son. I hope that he will remember me later in his life. I am here because of him! One doctor gave me an good advice. She sayed that it is allowed to take your own time and start to live and be a little more selfish. She sayed that Thymoma as any other serious illness is all-inclusive situation and therefore all the possible energy, mental and physical, should be used for recovery. To be even more selfish - it was very easy to do! (My wife agrees that too). Nursing has been taken care of in Finland. Basicly it is allmost free (except of expensive medicines) and quality of treatments are ok. Ofcourse as any other thing it is not absolute but at least people who needs help and care will be treated. I do pay aprx. 1000 DEM / year and after that all will be free. Number of examinations, surgery, time in the hospital and final radiation treatment did not cost me more than that. Now I understant why we have to pay so much taxes. Yes. I am still working. At the moment I am working only two weeks in a month. I will start to work like the others after this summer depending the situation of this illness. Thymoma did change my life a lot. Time to time the human life on earth looks me very purposeless. Why I did have to live over fourty years to find out how great the life can be? I have used my time too much for looking after the so called "better" future. At the same time I have been blind for beauty and love near by. Yoy did ask about easter. In the easter we did have few holidays. Easter is does not have so big importance in our family. Therefore we did not especially celebrate it. If we will recover, we will recover for what? A.A. |
 Things to do
at Wal-Mart while the spouse is taking his/her sweet time shopping. 1. Get the boxes of condoms & randomly put them in peoples carts when they are not looking. 2. Set all the alarm clocks to go off at 10 minute intervals. 3. Make a trail of orange juice on the floor to the restrooms. 4. Walk up to an employee and tell him/her in an official tone, "I think we have a code 3 in housewares," and see what happens. 5. Turn all the radios to a polka station, then turn them all off and turn the volumes to 10. 6. Challenge other customers to duel with tubes of gift wrap. 7. Put M&M's on layaway. 8. Move "CAUTION_WET FLOOR" signs to carpet areas. 9. Set up a tent in the camping department; tell others you'll only invite them if they bring pillows from the bedding department. 10. When someone asks if they can help you, begin to cry and ask "Why won't you people leave me alone?". 11. Look right into the security camera and use it as a mirror while you pick your nose. 12. Take up an entire aisle in toys by setting up a full scale battlefield with G.I.Joes and X_Men. 13. While handling guns in the hunting department ask the clerk if he knows where the anti-depressants are. 14. Switch signs on the men's and women's bathrooms. 15. Dart around suspiciously while humming the theme from "Mission Impossible". 16. Set up a "Valet Parking" sign out front. 17. In the auto department practice your Madonna look using different size funnels. 18. Hide in the clothing rack and when people browse through say "PICK ME! PICK ME!!!!!!". 19. When an announcement comes overthe loud speaker assume the fetal position an scream "NO!NO! It's those voices again". 20. Go to the food court, get a soft drink, tell them you don't get out much and would they put one of those little umbrellas in it. 21. Go into the fitting room and yell real loud.... "Hey we're out of toilet paper in here!". I can't understand why Millie won't take me to Wal-Mart anymore. |
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This is a response to a question about thymoma and it's relationship
to myasthenia gravis. Question: I am being treated for myasthinia gravis
(MG). Although I do not have any evidence of cancer, I was wondering if
you could further explain-in laymens terms-the relationship between thymectomy
and alleviation of MG symptoms. Thank you in advance. J Answer |
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Dear Sue: I believe RADS is the amount of radiation. She received up to 5000, and then took a break for evaluation. She would have continued on with a higher dose, higher than anyone had received for this (I believe 6000). But, as I mentioned, surgery became an option once the tumor shrank down from the radiation. When my sister saw her surgeon in Baltimore, at Hopkins just last week, he told her he never thought it would be operable, but here we are. As a matter of fact, she went home this past weekend! She is tired and a bit weak. She is also anemic, but all of this can be remedied. The important thing is that she has been treated at Hopkins in the best possible way. What an incredible medical institution it is. My sister's malignant thymoma was complicated by the fact that she had vena cava syndrome along with it. The tumor was pressing on her vena cava artery, thereby backing up the blood to her head, neck and shoulders. The bruising on her chest was from the vessels breaking as the blood was trying to find its way somewhere. My sister is 57 years old. I'm in Atlanta, she is in Florida. My reason for writing about this is to encourage cancer patients to get a second reading on their pathology. Had we not done that, I have no doubt that my sister would have died - probably from the complications of the vena cava syndrome because the tumor would not have shrunken off of the artery with the chemotherapy that was given. It wasn't the treatment of choice for this. Radiation was the way to go - and we were lucky - the radiation worked so well that she was able to have the surgery. When my sister was finally diagnoised with "whatever they thought it was" in Florida, our family sprung into action. We read some books in the oncology department of the hospital down there which were absolutely fantastic. I will get the names of them and let you know. The author of these books gave us incredible insight as to being a patient advocate and making sure that you take the right steps once you are told you have cancer - I will try to find them and give you the name of them. . Each of us was active in finding out everything we could. We knew that first and foremost, we needed the second reading on the pathology. After we got that, and it differed from the diagnosis in Florida, we knew we had to get her up to Hopkins as soon as possible. Unfortunately, between the time they diagnosed her in Florida and we got the pathology report back from Hopkins, the Florida doctor went ahead and put her through chemotherapy based on their diagnosis. Needless to say it wasn't the right protocal for this and she is still dealing with the repercussions of this treatment (her hair is only just starting to come back). As I said, we got her up to Hopkins, and they told her it was inoperable, and that radiation was the way to go with this. She had the bulk of her radiation, and then was evaluated. Miraculously, the tumor shrank, and not only that, but it moved off the vena cava! The surgeon said he never thought it would be operable, but here we were - planning the major surgery (cracking the chest bone and going in and removing the beast). The surgery was performed on September 9th and it was a success. The doctor was able to remove it, and the radiation oncologist implanted Iodine 125 seeds in her chest to take care of any microscopic cells left behind. My sister is now home in Florida. Very tired, but doing alright. This will take a long time to recover from, but she is here, and we will have her for many years. I credit Johns Hopkins and their incredibly talented and brilliant doctors. They are remarkable in their knowledge and compassion. Sincerely, Joan My sister Jan had a remarkable recovery from malignant thymoma with vena cava syndrome. I will write you her story in the near future - I just can't do it justice right now. Suffice it to say that she is a walking miracle considering that she was originally misdiagnosed in Florida and given the wrong protocal for this. She was properly diagnosed at Johns Hopkins Hospital in Baltimore, Maryland, USA (after we physically mailed the biopsy slides to them ourselves) - and the team of doctors there literally saved her life. At first, Johns Hopkins Hospital felt it was inoperable, but after weeks of radiation therapy, it shrunk not only to a smaller size, but off the vena cava! The doctors were amazed at how she reacted to their radiation therapy! They were able to operate, totally remove it in less than 2 1/2 hours, and consider her cured. Johns Hopkins is an incredible hospital - the number one research hospital in the U.S. They are familiar with this - and know how to treat it. My sister was very lucky. Her illness started in the fall of 1998, and by June 1999, she was feeling very bad due to the vena cava syndrome. Her face was swolen, and she looked like a chipmunk. She had gone to doctor after doctor in Florida, and no one did the proper testing to see what this was. Finally she was hospitalized in Florida after they saw the mass on an x-ray. They biopsied the mass, misdiagnosed it, and gave her chemotherapy - which was not what she needed. They were just not familiar with this - it is rare. We were able to get her into Johns Hopkins after 2 weeks in the hospital in Florida. When she arrived, her strength was gone due to the chemotherapy. It took weeks for them to stabilize her, and then they started her radiation treatments. God Bless Dr. Asrari - her radiation oncologist. She is phenomenal. In September she was operated on by Dr. Heitmiller, an absolutely incredible surgeon at Hopkins and one of the top surgeons in the country, if not the world. Her team of doctors was remarkable! Jan went home to Florida in November, and she is back at work. She gets tired easier than she used to, but she is doing very well. She had to remember to keep doing her breathing exercises, since the radiation therapy did affect her lungs. She had a terrible time at first, with anemia, and had to have blood transfusions to get her strength back. If I have one thing to say to anyone when someone in their family, or a friend is threatened with an illness such as this, it would be BE SURE TO HAVE A PATIENT ADVOCATE - someone who can stand up for you and see that the right things are done when you are in no position to fight for yourself! Had it not been for our family and the stand we took to get her out of Florida and up to Johns Hopkins Hospital in Baltimore, I know that she would not be with us today. Once we got to Johns Hopkins, we breathed a sigh of relief because we knew she was in the right place! I will write again soon. Sincerely, Joan - Atlanta, Georgia My sister Jan is doing very well. Her malignant thymoma (with vena cava syndrome) was removed last September. Prior to the surgery at Johns Hopkins, she had aggressive radiation therapy to shrink it. Surgery was not an option when she first went there, but God bless this radiation oncologist - Dr. Asrari - she knew exactly what to do. The radiation worked and did its job, and then the surgeon, Dr. Heitmiller (surprised by the phenomenal success of the radiation), took it out in less than 2 hours and the radiation seeds were planted to catch any microscopic cancer cells which may have been missed. To see her today, is to see a miracle. She does get tired at times, but she is back to work, walking, and living her life. Her's was an interesting case, since she was misdiagnosed prior to going to Hopkins. She had chemotherapy in Florida, which did nothing but debilitate her. Once she recovered from the mistreatment, Hopkins was able to get her on the right track and save her life. All of her symptoms started with head and neck swelling (from the vena cava syndrome - most likely a clot in the vena cava) which turned up this malignant thymoma. As you know, this was quite a journey. Our family was there 100%, and we know that were it not for our aggressive support and questioning, my sister wouldn't be here today. Patient advocacy is paramount to a proper diagnose and treatment. We took over where Jan wasn't strong enough to fight. We insisted on a second opinion from a major hospital (Johns Hopkins is one of the best, if not THE best research hospital in the world) on the biopsy slides, and this was the turning point. We credit Johns Hopkins in Baltimore, Maryland for doing what was necessary to to save Jan's life. Joan C. |
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Sue, My mom was recently diagnosed with a cancerous thymus gland. According to the info provided on your webpage, it appears to be Stage III or IVa. It sounds like you two have similar exposure. I did not allow the doctor to remove the thymoma around her diaphram or where it would impact her vocal cords because of the real threat that she would not survive the surgery. So, they anticipate that they only got 90% of the thymoma out. We really need some guidance about how malignant thymomas are treated. We are in San Antonio, Texas. We are looking for the most experienced oncologists to refer the oncologists here to. Any ideas? Any help you could give would be appreciated. Thank you. Danielle Hargrove, pdhargrove@compuserve.com Answer: Thank you so much for your kind words and support. My mom is doing great. She is recovering well from her surgery. She will begin radiation treatment in about 1-2 weeks. The oncologist wants to see how she responds to that first before she tries/starts chemotherapy. I believe she is in stage 4a. As soon as she can get back in front of her computer, I will make sure she can communicate with you and others directly. Thanks everyone. Danielle |
| I just wrote a long note but it got lost in the translator. I was operated
for Cancer of the Thymus with metatisis to the right lung in Jan.l987 I
preferred no follow-up treatment since there was not a protacol that had
been used frequently at that time. When the diagnosis of Malignant Thymoma
was verified by a second pathological conference, I did take two chemo treatments
with cisplatinum etc. I asked that the treatments be discontinued and I
did not have any radiation. I was sixty years old at the time, the recovery
from surgery was unremarkable. After a few months I went back to work as
a nurse and continued to work for five years. The scans taken through the
years have not shown any spread to other organs. However, at the time of
surgery the surgeon told me he was not able to find some of the lung lesions
which had shown of scans prior to surgery, so I knew that some was left.
The follow-up scans of the lungs have shown a slow progression of the size
and location of further spread. I have used Oxygen for the last six years
and have continued with an active life including several trips to Italy
. I am now 72 and am slowing down but have never had pain only shortness
of breath , perhaps the resection of the right lung at the time of surgery
has contributed to this. Be good to yourself and feel free to ask any follow
up questions I might be useful for Catherine. |
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Hi Sue, Hope your doing well! Hope your Easter was nice. It was nice to celebrate it with family, friends, and plenty of Italian food. Weather wise is was terrible. Sounds like the same weather you had on Sunday. It was rainy, cold and miserable . What can you do! Any ways, I am having trouble with my blood again. My doctors have dropped the dosage of the predisone (medication I take for my bone marrow to function) and my hemocrit is down ,I needed 2 pints of blood. I went yesterday to the hospital to have it done. I asked my nurse if there is ever any thymoma patients that want to talk about their situation etc I would like to be in contact. My nurse checked with other nurses and there was a thymoma patient in the room right next door to me she was receiving her chemo treatment and I was receiving blood. Unfortunately, we never made contact she was too nauseated from the chemo and was sleeping. I did give her nurse my telephone and e-mail address and once she is well maybe she will be in touch. Her nurse gave me a "purple tie" pin the woman's friends made them and call them the "Malignant thymoma awareness pin". In fact, I was reading the "question and answer"section of Thymoma Info from your site and happen to notice an e-mail from a woman "Carolyn" regarding her 30 year old friend Michelle with thymoma. Well guess what Michelle is the woman that was right next door to me at the Massachusetts General Hospital. She has the same doctor as me. She is from New Hampshire I hope she comes in contact with me. I would love to chat with her. I also sent her nurse your web site address and asked her to pass it along to other thymoma patients. (I hope that is okay with you?). There is not many of us with thymoma so knowledge is power. Your web site has been great! It is helpful to read about others with the same illness. Many thanks to you and your husband Jo. God Bless you and your husband! Maddy |
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Hello, Thank you very much for the information I did get from your home pages. They did a dianose for malignant thymoma on September 1999 and I had surgery on November 15 1999. My thymoma is (was) at stage III. While waiting the beginning of the radiation treatment your experiences helped me to understand what to expect. Now, two months after 55 Gr treatment and 5 months after the surgery, I feel relatively good. Thanks for the very sophisticated and advanced medical care and hospitals in Finland. I am still a live! I did left some parts of the past life behind. Now the time has a different significance as it use to have. Yes, I did say goodbye for the materialistic success. Now a days I do love these minutes and moments very much. The best I know is to be able to play with our son. I am using Pau'd Arco tea (known also as Lapacho) daily. Have you heard about it? At the moment it looks that it will be registered as an medicine in the near future. In Finland this tea will be available and for in sale only in official pharmacies. At the moment it is available allmost all the shops and super markets. With best rgds Arto Autio Answer: |
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Hello Sue, I am interested in learning more about your illness, and what you went through before you could write about it in the past tense. I, too, have a malignant invasive thymoma, and have been through chemotherapy, radiation treatment, and surgery. The surgeons were unable to remove all of the tumour. Currently, I am awaiting their determination for the next stage of my treatment. Any uplifting thoughts would be welcome. Geoff Price Answer: |
| Dear Jeanne, I think that it's very nice of you, that you want to stay in touch with this terminal ill woman. She'll need every support what she can get. In fact I think each of us should stay in touch with other cancer patients and help him or her through rough times. I wrote my resently deseased girl friend for 1 1/2 year and this friendsship was very rewarding for me. I knew I could make a difference in her life and that makes me feel good and I learned from her to have a different look at death and survival from cancer patients. I'm out of the country for two weeks but as soon as I'm back I will e-mail you again. take care. Sue |
| Joe, About 50% of all patients who have had a thymoma have myasthenia
gravis. This is a disorder that causes muscle weakness the can be specific
or generalized. Has Sue been evaluated by a neurologist? There are a few
simple tests that are diagnostic. She mentions continued fatigue in her
web article. I developed this disorder and treatment has helped me a lot.
Please pass along my message to Sue. Thank You, Daniel Joe, Exacerbation of the myasthenia gravis following surgery has left me very tired. Basically, I am very tired making it very difficult to respond to email. I will try to answer the survey, but it may be a while. Take Care, Daniel |
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Dear Sue: We are thankful that you are recovering well. We are only six months into my husband's bout with thymoma. We are discouraged. When his thymoma was found, he felt perfectly healthy. He had slipped on some wet flooring and fell and the doctor felt it best to take a chest x-ray. There was a mediastinal tumor and a tumor in his left lower lung. The doctor's first impression was lung cancer, but then they performed surgery and found it to be a thymoma with small tumors, too numerable to count, studding his pericardium, aorta and left lung. They did not remove the thymoma, only biopsied what they could. A week after surgery, he was having chemotherapy - adriamycin, vincristine, doxyrubicin and cysplatin. Because the cancer was so widespread, radiation was not an option. The goal of the chemo was to shrink the tumors to where they could be removed surgically. After six rounds of chemo, the doctor told us that although the tumors had shrunk some, they had not shrunk enough to justify continued chemo and surgery was not an option because of the extent of the disease. What we can't seem to get the doctors to do is to give us an answer as to how long he will live and what will the signs that he will feel that tell us that the end is near. I have not been able to find anything on prognosis for stage IVB. In a nutshell, that is our story. Thanks for keeping your web page updated. Dawn and Scotty Answer: Dear Sue: Age: 47 Perfectly healthy, at one time had hypertension, but lost some weight (on purpose) and no longer taking antihypertensives. Cancer treated at Cancer and Hematology Centers of West Michigan. Second and third opinion from University of Michigan and University of Indiana. Currently receiving no treatment for cancer. Taking lasix and potassium due to some residual edema from the chemotherapy. Currently feeling very well. Two months without chemotherapy at this point. Remaining side effects are nerve damage to fingertips which has not resolved. Still have some pain from the thoracotomy, but the doctor said that may never go away because of the nerve damage from the surgery. Thank you for your kind letter. It helps talking with someone who knows what it is like to deal with a rare cancer that there is little or no information on. Scotty and Dawn Answer: |
