Answer 1: Hi Carolyn,

sorry it took me so long to get back at you but I got a cold.

I thought a lot about Michelle, but I guess there is not much to do for you. Her parents are taking care of her immediate needs and what she needs right now is probably just time to herself and a hug and maybe every day a nice e-mail. When I was in the hospital ( for 6 weeks) my sister-in-law called me every morning and talked to me just a few minutes and wished me a pleasant day. I was looking forward to every call and she never missed a day. Sometimes the small things count even more than the huge gifts, because I knew that she really cared about me and that made me feel special. maybe you can establish something similiar with Michelle. I do understand her parents, that they limite the visitors. I had the same problem. I was happy to have company in the hospital and later on but every visit tired me a lot. My husband had to remind the visitors that they leave after a short visit. ( I would have felt bad to do it myself. it seemed so unpolite to me, but it was really necessary) So your contact is limited to e-mail, snail-mail, sometimes a phone call and once in a while a visit.

But you can do some research about a cancer support group in Michelles area. Even is she is not able to attend a meeting right now, most of the groups have someone who makes visits to the patients house. These people might be able to help Michelle to coupe with the issue of "hairloss". You know if she receives chemotherapie treatment there is a chance ( it depends on the type of chemo) that she will losse her hair. That's usually a difficult time for a woman and a counselor might soften her psychological pain and come up with some tips. Like where t get a wig or some alternatives like bandanas or hats. maybe even a make-up class can be set up. ( You know that a lot of chemotherapie patients also loose there body-hair, including the eye brows and lashes which makes the face look a kind of naked. Experienced make-up artists show patients how to deal with this situation and make them feel better about their own appereance.

If you're willing to do some more research for Michelle you should check out the possibilities of her enrollment in a rehabilitation program. I can't give you more advice about this topic because in germany our health system works totally different. I was twice in a rehab center. Once right after my treatment was finished and I stayed for 6 weeks and a second time 2 years later. A rehab center is a place where people with serious disease have a chance to recover. They have time for themselves ( which might me important for Michelle, since her parents stay with her all the time), have their privacy and time to think without any responsibilities. Usually you can do some light exercise and long walks, attend yoga groups and metitate and get counseling. They have nurses and doctors there to supervise your physical improvements.

Another tip for Michelle :

Introduce her to the books from Dr. Simonton. He writes about "visualisation" from cancer and is well known around the world. Go into a good book store and they know which books to show you.

From the authors of the "Chicken book" series you'll find one with the title " Chicken soup for the cancer soul". Have a look at it. I think it's very inspiring and uplifting.

Carolyn, send Michelle once in a while a special card with some thoughtful words. It'll help her to get through these days and it's truly a differece between a nice card and an e-mail. And if you want her to have a book just send her a parcel. You know this small things make all the difference in the world. And if you come across some music tapes with very soothing and relaxing music or some uplifting movies go ahead and give it to her. She'll appreciate it.

Dear Carolyn, good luck to you and give my best to Michelle. I have heard very good reports from her hospital and I know that she's there in the very best hands.

Pleae keep me posted.

Sue

Answer 2.:

Hi Carolyn,

I posted your question " How can I help a friend who has thymoma cancer" on my web page (Forum). Meanwhile I received one answer. As soon as I get more I will let you know or look once in a while in the forum. if you keep in touch with me and write me once in a while how Michelle is doing I would greatly appreciate your help. i would also like to know if or what of your actions helped your friends. Just this knowledge could surve other people with the same request.

Have a nice week and give my best to Michelle. Sue

Answer 3.:

Carolyn, It's wonderful you want to support your friend. If you are able to offer rides to the doctor that is a wonderful help as is an offer to pick up groceries and other items. This is what I have most appreciated--when a friend calls and says I am going to the grocery store today--what can I get for you? As opposed to saying call if you need anything--then I always felt I was really imposing. The doctor rides are wonderful--many days we don't feel like driving. Also, ask what sounds good to eat and try to provide that to your friend if possible. Those are some ideas. Kim Lansford (wlansfo@attglobal.net)

Dear Sue, Thank you for your thoughts and suggestions about/for Michelle. I appreciate the suggested reading. I would love the idea of a daily call, but her parents would not go for that...... phone use seems to be an issue with them, as their phone has probably never rung as much as it has in the past month. They have said they are not answering this week... in other words, please don't call.... and so I e-mail and write letters. I agree with your comment about sending areal card from time to time, and I have been doing that. One thing that I did that has been special to Michelle, and her parents have enjoyed it as well, is before she left for surgery, I gave her a huge basket with "a treat a day". She loves treats..... little gifts of all sorts. She always makes a game of trying to guess what is in any gift she ever opens anyway, but this way she also has something to look forward to each day. Some days when she was having a particularly rough day, her mother would suggest that it wast time for another treat. The over all effect seems to have been something like the daily phone call was for you. Of course, I didn't realize she would be going through all the treatment, etc. when I first started this, but I am now collecting things for the next installment..... some will be Easter items, and other general things..... cookies, candy, tea, candles, lotions, note paper, books, decorated magnets, socks, etc. It has been fun for all of us. I had figured that it was a way that I could be present to/with her even when I can't actually be there physically. If you have any ideas for little gifts that you think would be particularly useful or interesting, let me know. Last week she was feeling well enough to spend a couple of nights at her own home here in New Hampshire, and even to visit school for a few hours. Everyone was thrilled to see her and she was happy to be here. It is very obvious, however, when she starts to get tired. The color drains from her face, and those of us who know her suggest that it is time to go get some rest. She does not deny it when she is tired. She seems to know she needs to take care of herself and not push, even though pushing herself hard is her natural character. She is now back at her parents' house in Framingham, Ma., and from there she will travel into Boston daily for her treatments. Today was the first day of treatment...... both radiation and chemotherapy. I am wondering how things went. I am sure it was a long day for her. I am actually at the point again right now that I was shortly after her surgery when I don't know when I'll get to see her again.... pending how she reacts to the treatment, and I don't even know when I'll get to talk with her because of the phone restrictions..... Oh, well, I keep praying, thinking of her, writing, collecting little treats and treasures, and trying to be patient and understanding of the situation. Thank you for all of your help and support. Carolyn

Answer 1.:)

Hi Carolyn,

thanks for your kind e-mail. All the small gifts are a wonderful idea and very caring!

Just this moment when I read about your worries not to know how things are going for Michelle an idea popped in my mind.

Why not start a phonecall-chain???

I mean one friend is aloud to call every day or to visit, right???

So why don't you organize all the phone numbers from her friends and you call each other every second day. I'm sure you could work out a schedule or even keep in touch via e-mail. because it's in every one of Michelles friends own interest to get as much information, and as up to date a possible it should me worth a little effort from every one. Maybe even her parents can take their part in this kind of support.

if they don't want to be bothered by phonecalls suggest to them that they eather call someone from the list ( one of the friends who will then call another friend ....so that every one has to make only one call. That should be possible for most of the people with todays modern gadget like answering machines, cell-phone, fax, e-mail ...) OR they can post a short message on their own answering machine . Something like " Michelle had today another treatment. She has slept well but is still tired. her appetite is back. Now she is watching TV and enjoys her favorite .....)

Her parents will be moved ( or at least they should be!!) when you respect her way of caring for Michelle AND still think of additional ways to show your support and interest in her well beeing.

What do you think about my idea?????

Give my best to Michelle and you're a trully friend. I just can begin to imagine what a special person Michelle might be, if you go to such much trouble to care for her. I hope you received Kims message from yesterday???

Answer 1.:)

Hi Dawn & Scotty,

I'm sorry to hear about your health problems. Currently I'm only with one pateint in touch who has thymoma stage 4B, too. He is a 15 year old boy from former Yugoslawia. He receives his treatment in Germany. I will look for answers about your questions but the research might take a few days. Meanwhile it would be helpful for me to get some additional information from you.

1.) How old are you, Scotty? 2.) Do you have any additional health risk, any other kind of disease? 3.) Where did you receive your treatment? 4.) Did you get a second opinon? 5.) Do you receive , currently, any kind of treatment? 6.) How are you feeling? ( are you in pain, do you have trouble with side effects from previous treatment?)

Dear Dawn and Scotty,

I do understand your wish to know how long Scotty might have to live, but I guess most of the doctors are just not prepared enough for this kind of talk to a patient. Death is in our society still a topic what most of the people avoid under any circumstances and doctors are no big exception. Death let them feel their limitation in treating every patient sucessfully. Unfortunatelly the statistics are not very informative about thymoma. You can get every kind of information on breast cancer. My girl friend died 3 years ago and her prognosis was a life expectancy from 3 years after the cancer was detected. She did after 2 years and 11 months and one week. But the data about breast cancer are very accurate and up to date right now, where as thymoma is a rare type of cancer and we still have to be thankful to find even an more or less experienced doctor.

Keep in touch and I will try my best to get more information for you.

Sue

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

Hi Scotty and Dawn,

I hope you to had a pleasant weekend.

During my resent research I came across the page from amazon.com I had read probably every german book from Elisabeth Kuebler-Ross. She is a german writer and an american immegrant. She is the most sophisticated, honest and knowledgeable person on the topic death and dying. She has interviewed a lot of dying person, about their feelings and about the way they think about death. Just awaiting or fearing or even wishing to be close to the end. if you have a local bookstore where you get the chance to have a look at the books before you buy them this author might be a very good start. I like about her, her honesty. She is not the type to sugarcoat everythink, which I appreciate. Check it out and let me know what you think about it.

Sue

On Death and Dying by Elisabeth, Md. Kubler-Ross, Elisabeth Kbler-Ross

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Paperback - 286 pages Reprint edition (June 1997) Collier Books; ISBN: 0684839385 ; Dimensions (in inches): 0.70 x 8.44 x 5.47 Other Editions: Hardcover, Audio Cassette (Abridged)

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Editorial Reviews

Book Description

One of the most important psychological studies of the late twentieth century, On Death and Dying grew out of Dr. Elisabeth Kübler-Ross's famous interdisciplinary seminar on death, life, and transition. In this remarkable book, Dr. Kübler-Ross first explored the now-famous five stages of death: denial and isolation, anger, bargaining, depression, and acceptance. Through sample interviews and conversations, she gives the reader a better understanding of how imminent death affects the patient, the professionals who serve that patient, and the patient's family, bringing hope to all who are involved.

Synopsis One of the most famous psychological studies of our time, this classic grew out of one of the author's interdisciplinary seminars on death. Sample interviews and conversations provide a better understanding of the effects which imminent death has on patients and their families. On Death and Dying is being reissued with other titles by Kubler-Ross to tie in with the release of her newest book, The Wheel of Life.

Synopsis An audio presentation of the world-famous bestseller in which Kubler-Ross examines attitudes and factors that contribute to society's anxiety about death. 2 cassettes. --This text refers to the audio cassette edition of this title

About the Author Elisabeth Kubler-Ross, M.D. is a medical doctor, psychiatrist, internationally renowned thanalogist, and a best-selling author. Her other books include Living With Death and Dying, Questions and Answers On Death, and On Children and Death. She currently lives in Virginia. --This text refers to the audio cassette edition of this title

Death and Reading

Reviewer: Death from beyond the veil March 7, 2000

It's a very practical book. No woner it has stood the test of time. More of you living beings should pay attention to this wise compendium of advice before you meet up with me.

0 of 3 people found this review helpful. Was this review helpful to you?

Essential Reading

Reviewer: A reader from London, England August 17, 1999

A brilliant book by E. Rubler-Ross who has dedicated her life to researching the needs of terminally ill patients & their families. This is essential reading for everyone, whether you have had to face death (either your own or a loved one) or not. It is common for Westerners to deny death by not discussing it, or even thinking about it. This book illustrates the many problems that can arise from this attitude & the heartache it can cause the terminally ill & their families. Thanks to E. Kubler-Ross for an amazing lifetime achievement.

24 of 24 people found this review helpful. Was this review helpful to you?

Great book for understanding the dying's needs

Reviewer: A reader from Brighton,Mi August 22, 1998

I purchased this book as it was refernced in a number of business books I had read. I was trying to understand peoples reaction to significant organizational change. The book was really insightful. I got more than I expected, as the book helped me to understadn the actions of my diying mother-in-law

how is your mom doing????

Where you able to connect your doctor with one specialist, already????

I posted your request in my forum on my homepage and received one answer already. Her is the mail:

Danielle, I will admit that Sue's web site is more sophisticated than I am at using it. I have thymoma myself. I am stage 4 and began chemo last Sept (1999) and after 4 rounds of that, had surgery in January for two large tumors and 6-8 small ones, plus removal of part of my lung and had my diaphram rebuilt. I am a patient of Dr. Patrick Loehrer at Indiana University. My husband and I consider him to be the expert of this disease. I live in Arlington, TX. You can email me directly at wlansfo@attglobal.net. You can reach Dr. Loehrer by email at ploehrer@iupui.edu. Kim Lansford

Please danielle, take the time and keep in touch with me. I need every information what I can get about the results of any thymoma treatment. Because it's such a rare cancer we're all depending on each other and everybody is very thankful for informations. To a lot of patients it seems that most of the legwork has to be done by the patient or their relatives. Visit once in a while my web page. I try to update it more often.

Give my best to your mom and tell her, that are other thymoma patients out there who're thinking about her. If she needs help or you, don't hesitate to ask. I have people in the group who are patients, relatives of patients or just friends but they're alltogether a nice and helpful bunch of people.

Bye Sue

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

Hope you and your hubby have recuperated from the flu. It has been a bad year for the flu. My doctor convinced me to get the flu shot because it would be particularly bad getting the flu after your body has been through so many treatments. So I got the flu shot and knock on wood I did not get the flu yet this year. I did not get good news from my latest CT Scan. They found a small (1 centimeter) nodule near my diaphram/abdominal area on a lymph node on my left side (where thymoma originated) and 2 small nodules on my right side. The 2 on my right side can be surgically remove. The spot on my left side cannot. So my oncologist said the only form of treatment is some form of chemotherapy. He gave me 3 choices.

1. Wait and see what happens on the next CT Scan because the doctors will know what course of treatment will work better. Also, my body has not had enough time to heal from the last treatments and surgery. The nodules are very small and I do have the time to wait.

2. Start traditional chemotherapy (Ifosfamide). There are no guarantees that it will shrink or remove the nodule.

3. Use some experimental chemotherpies that have been used on other cancer patients with similar nodules etc.

My first reaction was to start treatment right away, but as I talked it over with my doctors they feel it is better to wait 3 months and see what the next CT Scan shows. I am told that thymoma is a slow growing type of cancer so the chances of it doubling in size within 3 months is not likely but if it does double in size it is still considered small. I am going to get some more information on the experimental drugs so that I am prepared. My family wants me to seek a second opinion on the course of treatments at a cancer center such as Dana Faber which is located in the Boston Area and is partners with Massachusetts General Hospital (where I go). I feel I have one of the best oncologist for this type of cancer but I suppose it is a good idea to seek another opinion. I am very stressed over this decision. I did not expect the cancer to be back this soon. But it may have been there already after the surgery. (it is in a spot where the surgeon could not go into) But I also had chemo and radiation treatments after the surgery? Other than Daniel do you know of any thymoma patients that have had a reoccurrence of the disease and the course of treatment used etc.?. That would be helpful. getting more information. about this. I will keep you posted on my situation.

Take care!

Madeline

Answer 1.;)

Hi Maddy,

I'm sorry to hear that you're in trouble again.

I looked through every correspondence what I ever had with a female thymoma patient and I came up with a pretty similar story.

I copied a part from the letter for you:

==I am 35 yrs. old and live in Bloomsburg, Pennsylvania. I also have malignant thymoma. I was diagnozed in Jan. 1998. I had surgery, 7 chemotherapy treatments and 37 radiation treatments. I was in remission for 6 months. I found out 3 months ago that my tumor is active again. I just began a new treatment 2 days ago. I am self-injecting .5 mg of octreotide 3X a day. The side effects are very minimal. Usually 5 minutes after the injection I will be slighty nauseated and I'll get a slight headache. These symptoms only last about 5 minutes. It definitely beats traditional chemotherapy.===

See if it could help you.

Now my opinion about the recurrence.

Maddy, thymoma is a very slow growing cancer, which will give you the time to find the right treatment. I myself think of the thymoma cancer often as a kind of tree with lots of branches and some of them are very small and nearly invisible. That's what it makes it so very difficult for every surgeon in the whole world to get it all at once. Especially if the cancer likes to play "hide and seek". So there is indeed a very good chance that at least a part of the cancer was already there when you had your surgery. Why the "left over" was not caught by the chemo or radiation treatment is a good question. I have no idea. To seek a second opinion is a very good idea and doesn't necessarily mean that you don't trust your doctors completly, but afterall thymoma is a pretty rare cancer and so it's good to get the very best treatment plan what you can get your hands on. Don't go for the second best.

There is an oncologist in Indiana with an extraordinary reputation. Maybe you want to check with him also. I think right now you want to go for a second opinion to an affiliated hospital from yours. Do you think they're independend enough to come up with a different treatment plan?????

Here is a copy from a part of an e-mail what I received:

=====The expert (we think in the world) is Dr. Patrick Loehrer at Indiana University Medical Center in Indianapolis, IN. He has been treating patients and doing research for a long time--more than 15 years I believe. ====

Please let me know, what you intend to do. i think as soon as you made up your mind you'll feel better, already, because most of your stress is related to the question"what to do".

Sue

Answer 2.:)

Hi Maddy,

check this page for information

http://www.noah.cuny.edu/illness/cancer/nci/cancernet/201248.html#RECURRENT MALIGNANT THYMOMA

Bye Sue

Answer 3.:)

Hi Maddy

http://www2.cancer.org/contact/dsp_EntryAction.cfm

check out this side and join the newsletter.

Sue

Answer 4.:)

Hi Maddy,

I just received an update, via e-mail, from the woman who was treated for her recurrence of thymoma.

===I was on a clinical trial. I've been on it 6 months and I just went off about 3 weeks ago. In addition to the octreotide injections, they put me on prednisone. (cortasteroids) The side effects from the prednisone became too much to handle. I was miserable. I had muscle weakness, headaches, severe joint pain, swelling >from the water retention, depression and I gained 20 lbs!!! I just weaned off the prednisone last week and I feel much better. It will probably take another 6 weeks or so until all of the weight comes off. Otherwise I feel great. My last CAT Scan in February showed some shrinkage to my tumor. =======

Maddy I hope all this information will help you.

Sue

Hi Sue,

Thanks so much for getting back to me with this information about the woman in Pennslyvania. I am going to mention the treatment to my doctors. I am currently on prednisone for my blood condition "red cell aplasa" I have been on it for 5 months now. It is a nasty drug and the side affects are just as she described. I gained 25 pounds. I went from taking 60 milograms to 15 milograms and I have to continue to stay on it because it makes my bone marrow function. Without it, I would need blood transfusions every 2 weeks because my hemocrit would go down to 12. I am going to wait till my next CT Scan before starting treatment. In the meantime I want to get as much information that I can on the course of treatments options so that I will be prepared in 3 months.

Answer:

Hi Maddy,

just the other day wrote me a lady who had surgery almost 3 years ago ( stage 4A) She is doing fine.

I copied a part of her mail for you, because I thought you might contact this people too.

===Read your story on the Internet. I, too, have Thymoma--the same stage as you. Long time ago I called the R.A. Bloch Cancer Foundation (816-932-8453) in Kansas City for someone with the same diagnosis and they had a lady call me.====

Maddy, I hope you're feeling more at peace right now. I can understand that it's very difficult for you, but I'm confinend that you'll pull through because you seem to me the person who can fight , and that by using the mind also. The last part, using the mind in a difficult situation is very important an you can avoid a lot of costly mistakes. ( I'm not talking about money, I talk about treatment. If you just react you'll end up with the first available treatment but what you really need is the best "fitting" treatment) Sorry, I had to explain myself in many words to make sure that you would understand my english.

A big hug for you Maddy and give my best to Daniel. I'm glad to hear that he is better.

Sue

Read your story on the Internet. I, too, have Thymoma--the same stage as you. Long time ago I called the R.A. Bloch Cancer Foundation (816-932-8453) in Kansas City for someone with the same diagnosis and they had a lady call me.

After surgery in Nov. '96 I was told that I would need radiation. I didn't know anything about radiation, so I tried to learn what I could. I found that there was a newer form of radiation called Proton, but it was only available in two places in the US. I started the radiation in Jan. '97 at the Loma Linda Hospital, in Loma Linda, California, with 5 treatments of conventional radiation, then 7 weeks of Proton. There were no side effects, other than being tired. With Proton the radiation is VERY PRECISE in depth as well as everything else. The only thing is that I don't have the lung power to walk uphill, level is no problem. I seem to have spells of perhaps a week at a time where my muscles seem weak all over, then it goes away. So I joined a gym to gain some strength in my muscles, but it leaves my muscles very tired. At this time, I don't know if this is part of Thymoma, or just my age and I need to go slower. The only thing that my doctor recommended was watch my fat intake, and walk 30 minutes 3-5 times a week. The walking seems to help me have more energy, and less depression. I, too, am not the type to get depressed, but it is something that I find myself caught up into, especially if I'm not active or people keep asking me how I am, and keep my mind on myself. I am not visualizing-type person, but I believe in God, and have put myself in the hollow of His hand for whatever He see's fit to do with my life. I guess, that is what I visualize. I found the books "Chicken Soup for the Soul" excellent, too! I profoundly believe that laughter is the best medicine, and stress in any form a destroyer.

What have you heard from people that seems consistent with this Disease? What are those that seem to be "survivors" (past 5 years)doing to prolong their life? I take the vitamins you are taking, plus I take Grapeseed extract capsules (Antioxident). What does the Mistletoe do for you? What does research suggest?

Would really love to hear from you! Sally

Answer 1.:)

Do you have any family history of cancer in your family???

Have you had a stressful time period before your cancer was detected???

Would it be possible for you to answer my query on my homepage???

You know so many people are eager to know if its possible to survive and live a happy life with a diagnosis stage 4A. I'm sure it woud mean a lot to may people who're out there and seeking for help and for guidance.

Oh by the way, there is another question.

Why should to watch your fat intake and what is the amount what your doctors consider healthy. I'm slim so I don't bother usually but maybe that's a helpful information.

Misteltoe is a substance which makes the immune system stronger. The treatment is quite common in german hospital which are more into the "natural medicine" instead only the school medicine. I feel good about it and because of my possitive attitude towards it, I think it's working and boosting my immune system.

Dear sally, I'd love to hear soon from you again.

Take care and I'll get back to you as soon as possible.

Sue