About Mice and cancer-treatment

champions

This link is to an article that Suzie Siegel wrote about the upcoming clinical trial using mice to help doctors choose the right treatment for someone with advanced soft-tissue sarcoma: http://sarcomaalliance.blogspot.com/
champions
Cancer treatments have been tested on mice for years.

Now a new technology uses mice to determine which treatments may best fight an individual patient’s sarcoma.

 

 

The TumorGraft technology “provides options for patients in difficult situations when, often as doctors, we are not sure how to treat people” said medical oncologist Justin Stebbing, a professor of cancer medicine and oncology at London’s Imperial College. “In doing so, it advances the frontiers of science and medicine, but in a practical way, giving clinicians information on treatment choices – what is likely to work, and as importantly, what is likely to not work.”

 

Posted: May 2015

 

Chondrosarcoma: an analysis of 2890 cases

Chondrosarcoma in the United States (1973 to 2003): an analysis of 2890 cases from the SEER database.

(For the full paper see link below)

Background: Current demographic, prognostic, and outcomes data on the diagnosis and treatment of chondrosarcoma have been based on case series reported by individual treatment centers. The SEER (Surveillance, Epidemiology and End Results) database is a validated national epidemiological surveillance system and cancer registry that has been used extensively to evaluate treatment outcomes in cases of malignancy. The purpose of the present study was to use this database to identify demographic and prognostic characteristics of chondrosarcoma and to describe the natural history following the treatment of this rare disease in the United States over the last thirty years.

Methods: Two thousand eight hundred and ninety patients with chondrosarcoma were identified in the SEER database, and information regarding the demographic and clinical characteristics of the patients, the histological features and grade of the tumors, the location and size of the tumors, the surgical stage at the time of diagnosis, the use of surgery and radiation treatment, and survival were extracted.

Results: Comparison of the overall and disease-specific survival rates revealed that patients who survived for ten years were more likely to die of events that were unrelated to chondrosarcoma. The disease-specific survival rate leveled off at ten years of follow-up. Univariate analysis revealed that female sex, a low histological grade, and local surgical stage were associated with a significant disease-specific survival benefit. An age of fifty years or less and an appendicular location of the tumor were associated with a significant overall survival benefit. On multivariate analysis, only grade and stage had significant association with disease-specific survival. On the basis of a comparison of survival rates according to the decade of diagnosis, it appears that there has been no significant improvement in survival over the last thirty years.

Conclusions: Only grade and stage are independent prognostic factors for survival in cases of chondrosarcoma. Current treatment algorithms have not improved the survival rates of patients with chondrosarcoma over the past thirty years. Routine patient surveillance following treatment should be extended to ten years of follow-up. 

Giuffrida-2009.pdf

ChondroSarcoma (19 years old girl)

Daniela Tendler, 24, shares her 5+ years journey fighting cancer. Diagnosed with ChondroSarcoma – a very rare type of cancer, Daniela has overcome 3 relapses and now battling relapse #4, going through treatments which are not part of the familiar protocol. Watch this video to learn more about the latest and greatest in ChondroSarcoma treatment.
If you have information that can help Daniela (new treatment, best doctor etc.), please contact us: MyChildCancer@gmail.com

At MyChildCancer.info we interview parents and young patients from all over the world in order to share life-saving information on rare types of cancer.

ChondroSarcoma (16 year old girl)

(NOTE: THIS MOVIE IS PART #2 OF THIS TESTIMONIAL.  CLICK THIS LINK TO WATCH THE FIRST PART)

 Shahar Milfelder, a 16 year old girl, is currently fighting ChondroSarcoma which is a very rare type of cancer that usually affects elder people. The family is looking for young adults from around the world who suffer(ed) from the same disease and may have information about best available treatment and doctors.

If you are a parent to such patient or if you have such information and would like to contact the parents, or alternatively if you wish to recieve information from them, please go to our “contact us” page.

MyChildCancer’s founder, Oded Grinstein, is interviewing Yael & Tamir about the different aspects of their daughter’s disease, treatment and challenges.

This interview is part of MyChildCancer’s mission to extract hidden life-saving information and make it easily accessible to other parents all over the world. Because knowledge saves lives.

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Q: Please mention your name, your daughter’s name, her age and the type of cancer which you are dealing with.

Our name is Tamir and Yael Milfelder. Our daughter’s name is Shahar. She is our youngest daughter – 16 years old. She has Chondrosarcoma for 4 months now.Q: So Shahar is 16 year old and she was diagnosed with ChondroSarcoma. The “Chondro” relates to the tissue between our bones. Please tell us about the early signs and the diagnosis process from your first visit to the doctor and until the final diagnosis.
Shahar felt she has something in her pelvic; she said that in one side she can push with her finger however on the other side she feels some kind of a lump. At first we didn’t take it too seriously however she kept pushing and after a month we went to the doctor who sent us straight to the hospital. At the hospital they immediately noticed that there was some kind of tumor in there. At first they thought it’s on her ovary so we were sent (from Schneider’s children hospital) to Beilinson Hospital. She was treated by the head of the department at Beilinson hospital who said he doesn’t see anything and sent us back to Schneider hospital. Over there they did some additional tests and said it is probably a sarcoma of the bone and that a biopsy is needed to make the final diagnosis. When the biopsy’s results cam in it turned out to be a very rare type of cancer, which usually attacks elderly people, and is called Chondrosarcoma.

We were then transferred to the Ortho-Oncology department at Ichilov Hospital, headed by Dr. Kollender, where she underwent a big surgery. During the surgery the doctors were unable to get clean margins in the pelvis’ joint area, which means that there are probably still cancerous cells there. BTW, during the surgery they had to remove the Os Ilium (the upper bone in the pelvic). The tumor that was removed was very big: 10x7x6 cm in size.
After two months we got recommendation to undergo Proton therapy – which are not available in Israel, therefore we came to the U.S to get this treatment in Procure center in Somerset, NJ.
Q: Since she was diagnosed and till today, how much time has passed?
Four months.
Q: During the time of the early signs, what did eventually make you go to the doctor?
Eventually it was Shahar: we heard her complaints, did not give it the deserved attention but she kept pushing and she took us to the doctor.
Q: And this first visit to the doctor turned your ‘red lights’ on.
Yes. It is important to mention that Shahar did not suffer from any pain nor did she have any other irregular signs such as bad appetite, loss of weight or any other signs. She is a basketball player, an active student, and there was no visible sign.
Q: So eventually, other than Shahar’s feeling that something may be wrong, there were no other signs.
Yes.
Q: The doctor sent you first to Schneider Children Hospital. What was the process there?
We started with scans – roentgen, ultrasound and MRI which demonstrated the tumor.
Q: How was the biopsy done?
The biopsy was done in Ichilov during a little surgery, via the abdominal.
Q: Was the biopsy part of the surgery?
No
Q: Was it part of the diagnosis process before the surgery?
Yes, it was done in Ichilov and the pathology was also done in Ichilov. There they have also determined the grade.
Q: Why did they do the biopsy separately than the main surgery? And why in a surgery rather than using a syringe?
At the beginning they thought it’s a sarcoma which according to the protocol needs to first get treated with chemotherapy and only then a surgery to remove the tumor before additional post-surgery chemotherapy is given. However, once they identified it as Chondrosarcoma following the biopsy, there was a change of plans.
I think they chose to do the biopsy via surgery because of the sheer size of the tumor which may require a deeper evaluation before a main surgery.
Q: With which other type of cancer was this one confused?
With bone sarcoma. They said it’s probably a sarcoma but no one thought it’s Chondrosarcoma, which differentiates from sarcoma by the fact that it is not treatable with chemotherapy.
Q: Chondrosarcoma is a rare type of cancer, which usually affects elder people and since it’s located in the Cartilage it is not treatable with chemo (chemotherapy is carried in the blood circulation which does not reach the cartilage).
Indeed, however even though it is originated from the cartilage it is still defined as a bone-cancer.
Q: What are the available sources of information which you are aware of for Chondrosarcoma? Where did you look and where did you find relevant information?
The information we saw was mainly from the web. Thanks to this information we got in touch with doctors in Israel and abroad and were able o consult with them.
Q: Can you mention the leading doctors for Condrosarcoma in Israel?
Our prime care giver was the head of the Orto-Oncology department in Tel-Aviv Ichilov hospital, Dr. Yehuda Kolander, with the support of Dr. Shlomo Dadya, Dr. Yair Gorcheck and Prof. Yair Bickels. We were mainly treated by Dr. kolander, however we also got consultation from Prof. Miryam Ben-Harush (Rambam Hospital), Prof. Gideon Rechavi (Tel Hashomer hospital) and Dr. Daniala Katz (Hadasah Ein-Karem).
Q: These are the leading names in Israel. Do you know who is considered to be a leaing doctor in the world for Chondrosarcoa? Which hospital has the most practice and which doctor has the most experience?
Yes, we know that Dr. Leonard Wexler (MSKCC) is considered an opinion leader in sarcoma cancers. Actually Shahar’s medical file was presented to Rabbi Firer who recommended we get in touch with Dr. Franklin Sim from Mayo clinic in Minnesota.
Q: You have mentioned that there were no clean borders post-surgery. What were the options presented to you then?
The only conceivable option was Proton therapy, which is not available in Israel. On a later stage, since the biopsy was sent for a second opinion by Dr. Rosenberg in Florida, it was determined that the grade is 1-2 and not 2-3 like they initially thought in Israel, which means it has smaller tendency to relapse.
Rabbi Firer then sent these results to Dr. Franklin Sim (Mayo Clinic) who said that a full recovery would only be possible with another surgery and an amputation of the leg. We decided not to peruse this path. In hindsight we know today that the grade was 2 out of 3 which correlates with the opinion of the doctors in Israel as well as Dr. Eugen Hug from the Proton center in NJ that the treatment should include Proton therapy post-surgery. The amputation surgery was off the table at that point.
Q: Explain the “Grade” issue: is it similar to “stage”?
Grade means the level of malignancy. No one spoke to us about stage. There are 3 levels of grade: 1, 2 and 3 which is the worst.
Q: Does Grade 3 mean the patient has it in other places in your body?
Not necessarily. It means that the tumor is of high malignancy type, with the tendency to spread to other parts of the body and create metastasis. It’s more violent. ChondroSarcoma in general is usually of a lower grade. In our case the grade is 2. The pathology results in Israel showed it’s between 1 and 2.
Q: So eventually, because it was defined as grade 2 you got the recommendation to amputate the leg?
Apparently yes. It is just a speculation, we want to make clear. They brought up these options after the surgery because of the further spread-out that unfolded; therefore they mentioned the option of surgery. Overall it was evident and they made it unequivocally clear to us that a chirurgic procedure is supposed to be the best solution.
Along with this they said that during the initial surgery, for the tumor removal, they went as far as they could reach in order to remove the cancer tumor but even though they scrapped the majority of it, there were unable to remove everything and a few spots remained untouched. That is why we have to proceed now with radiation therapy.
Q: Did you check or do something regarding the alternative medicine field?
We know about a particular lecture of a Mexican Doctor that specialized in the combination of nutrition and the spirit of the mind as an alternative but, no, we have not implemented any action towards that yet and we chose to focus on the conventional medicine.
Q: Last question; To other parents who may be observing you while they are coping with a similar situation of Chondrosarcoma of their own child, based on your 4 months experience, what would you recommend?
First of all as far as I know, Shahar is the only child in Israel with Chondrosarcoma, which means the knowledge about this type is proportionately limited. Therefore we decided that we’re the ones that must conduct this battle for our child, get as much help from friends, relatives, doctors and professionals, anything we can get our hands on to obtain as much knowledge as possible to find hope for a solution to this illness. After this treatment Shahar supposed to get back home healthy but we wish to continue the level of alertness during the entire process to maintain searching for information or resources that will add support and prepare us with other contingencies in case this illness rejuvenate.

Q: Any specific recommendations to other parents that begin this process?
It is like a business plan, you have to prepare well, harvest considerable amount of information from top doctors, experts and Internet. Don’t ignore any potential resource that can serve as guidance. Israel is a small country however it’s possible to get relevant information from doctors in the U.S.
Search and utilize every possible approach to acquire knowledge from reliable sources. Whatever they don’t know today they may know soon or later. Also, the advice of taking your own initiatives for this illness because no one will care enough or as much as parents do, now and later on.
We get as much help from doctors and give them a lot of credibility but no one will render as much effort and concerns than us parents. We are not hesitating to get any kind of help we can, such as this particular website (www.MyChildCancer.info) and the people who are running it. We meet and consult with them about our plans and even to acquire tools to search the internet and move forward with our plans.
I would like to add that parents to ChondroSarcoma patients who are watching us now, from anywhere in the world; our cooperation and exchange of information and knowledge could help us and vice versa.

Interviewer: So we are actually inviting parents who are watching us from all over the world and have relevant information on chondrosarcoma in children and young adults, to approach us and to share knowledge.
Yes. We are accessible via phone, e-mail and any other way of communication.

Oded: Thank you. Anything else?
It is important for me to mention that Shahar is a teenager in the age of fertility.
The operation that was done and the radiations in some degree are susceptible to harm and endanger her productivity in the future. That’s why as a preventative measure we made the choice of removing the ovary and did an egg collection so in the future when she get to the right age we won’t regret it and say we could have and we should have done that why didn’t we?
That was somehow a responsible decision on our part and was amenable by other experts.

Thank you.

Thank you.

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RhabdoMyoSarcoma (9 months old girl)

This is the story of Shani (9 months old) who was diagnosed with RMS. Her parents relocated from Israel to NYC to provide her the best treatment available, and they claim that by doing so they have saved her life. *** WHEN RELOCATION SAVES A LIFE

Shani is the daughter of the founder of MyChildCancer.

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Hi. My name is Oded. We are from Israel.

Diagnosis
My daughter was diagnosed with cancer when she was 9 months old. She was diagnosed with RhabdoMyoSarcoma (alveolar), stage 4. Once the diagnosis was confirmed with a biopsy we immediately started treatment in one of the leading hospitals in Israel.

Treatment in Israel

She received 5 cycles of chemotherapy under the Israeli protocol (which is following the European protocol) and during that time we started looking for a hospital or a doctor with extensive experience in this specific type of cancer as this is a very rare and aggressive type of cancer in a very young child.

Treatment in U.S

After searching the globe with the help of family and friends, we got in touch with Dr. Leonard Wexler from Memorial Sloan Kettering Cancer Center (MSKCC) in New York. We learned that while our knowledgeable doctors in Israel have never treated babies with this combination of age, sub-type and location in the body, he has treated dozens of similar cases.

Therefore, once we have finished the 5 chemotherapy cycles in Israel we came to New York, originally just for surgery & radiation, however when the first scans results came back it was clear that the tumor is growing again, which meant she was not ready for surgery. We needed to restart the chemotherapy. This time she received an additional 9 cycles of chemotherapy under a different protocol which includes high-dose chemotherapy.

The high-dose chemotherapy was very very tough on our baby. Our child was suffering and being just little over 1 year old she was not able to express her needs. We were helpless, frustrated away from home in an unfamiliar environment.

In addition to the chemotherapy she undergone 2 surgeries; One main surgery during which the tumor was removed from her lower back and spine (performed by Dr. Mark Souweidane from Cornell across the street), and a second surgery to search for additional cancerous tissue in nearby organs, such as Lymph nodes (performed by the great Dr. Michael La Quaglia).

Radio Therapy

Following these two surgeries she undergone 20 cycles of Radiotherapy (RT). RhabdoMyoSarcoma is a type of cancer which responds well to RT, which makes it an important part of the treatment. Tumor being located in a very delicate place – touching the spine and surrounded with the bladder and other internal organs, it was very important to us that the RT will be done by the most experienced doctors we could find, to minimize the risk of the child’s future development and growth. That actually was another consideration of ours to go to MSKCC to begin with, as the RT doctors there specialize in children – that’s what they are doing all day long. As a reference, our RT doctor in Israel treats mainly adults as there is not enough volume of pediatric patients to do just that and subsequently acquire a great deal of experience.

In hindsight

All in all just over a year and a half of treatments in Israel and the U.S, but the end result was good. The end result was that she was declared ‘cancer-free’ and to this day, more than two years after she has finished treatment, she is still ‘cancer-free’.

Of course we know we are very lucky. We know many other children who are not with us today, some with the same type and stage who received the same treatment. RhabdoMyoSarcoma is considered a rare and aggressive type of cancer.

People ask us why did we come to get treatment in the U.S considering that Israel

is well known for its high-tech and advanced medical capabilities, medical devices and research. That being true, Israel is a small country; about 7 million people, which means that if you have a rare type of cancer, like in our case, experience would more likely exist elsewhere. In childhood cancer a doctor’s experience can make ALL THE difference.

My daughter’s case, the sub-type and location, combined with her very young age created a very rare combination of 1 in 403 million. When we came to Memorial Sloan Kettering she was actually treated with two other children with similar diagnosis and from a similar age group. We are convinced that by coming to the U.S for treatment we saved our daughter’s life.

This is our story in a nutshell.

If I could go back in time..

“If you could go back in time with your current knowledge and experience, what would you advise yourself, the day or the week after the diagnosis?”

The answer is almost never straight forward. Most of the times there are many things one would say, about the ‘do’s and ‘don’t’s and pits to avoid. For us, I think the most important and the strongest advice I would have given myself is to get actively involved in the decision making process. Be part of decisions regarding treatment. For this to happen though one should understand what’s going on, who is who, learn the terms, and keep close contact with the doctors.

In order to be part of the decision making Process you should be able to have an educated conversation with the doctor; when he/she speaks about the alternatives and the possibilities, you need to be able to understand what he/she is talking about and to ask the right questions. It’s easier said than done, as most of us are not doctors and there is a set of new terms to learn, but highly important. I have found out that being an involved parent could definitely make a difference in many different ways, from strategic decisions and all the way to saving my baby an unnecessary needle stick.

What would I recommend?

“What would you recommend to a fellow parent whose child was just diagnosed with the same type of cancer?”

In cases of RhabdoMyoSarcoma in a very young child, I would recommend to get in touch with Dr Leonard Wexler, currently at Memorial Sloan Kettering Cancer Center in New York.

Dr. Wexler is part of a team, however as the oncologist he orchestrate the treatment, including radiation and surgery when needed. He has lot of experience with that type of cancer (I would assume one of the most experienced doctors in the world for this type in children). Plus he is a true mensch with a great attitude for kids.

It is important to say that in order to get a second opinion from Dr. Wexler’s there is no need to relocate to NY for that. You should ask your doctor to contact MSKCC and get in touch with the medical team in memorial Sloan Kettering. If for some reason he/she fails to do so (or refuses), this is where you need to get actively involved and contact MSKCC yourself.

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Clear Cell Sarcoma of the Kidney

wikicancer

Cancer Localisation: Kidney & Urinary tract

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This page is under construction.

If you would like to provide relevant information or recomendations for this page please send it to MyChildCancer@gmail.com or visit the “contact us” page.

RhabdoMyoSarcoma

wikicancer

Childhood Cancer Name: Rhabdo-Myo-Sarcoma
Childhood Cancer Localisation: Soft tissue
Childhood Cancer Noticeable Symptoms: lumps
Childhood Cancer Diagnostic method: MRI scan, PET/CT scan, Biopsy analysis
Childhood Cancer Treatment: Chemotherapy, Radiation, Surgery

Rhabdomyosarcoma in a nutshell

Rhabdomyosarcoma (RMS) is classified according to the histology of the cells (how they look under a microscope).
There are 4 different types of RMS; The most common one is called Embryonal and the most dangerous one is called Alveolar.
The 4 types are:

    1. Embryonal: The most common type, usually found in children under 15 years of age and in the head and neck region and genitourinary tract.
    2. Botryoid: A variant of the embryonal type; the tumor arises as a grape-like lesion in mucosal-lined hollow organs such as the vagina and urinary bladder.
    3. Alveolar: A more aggressive tumor that usually involves the muscles of the extremities or trunk, more common in adolescents.
    4. Pleomorphic: Rarely seen in children; arises in muscles of the extremities.

If your child was diagnosed with RMS, here is a list of questions you should ask your doctor. Additional relevant links can be found below.

Cancer advice from parents of children with cancer;

  1. At Memorial Sloan-Kettering Cancer Center in NY Dr. Leonard Wexler is conducting a relatively successful clinical trial with high-dose chemotherapy. It is probably the best place to be if your child has RMS.
  2. The radiation treatment is super important as the RMS reacts well to radiation. Therefore, make sure this part of the treatment is being done in the most professional way; You may want to consider traveling to a facility which specializes in Radiation therapy in children.
  3. Alveolar RMS (ARMS) is a very aggressive and very violent type of cancer with the tendency to relapse. That’s why is is crucial to defeat the cancer on the first try. Do the best you can and be proactive early!
  4. ALWAYS get a second opinion on the biopsy and suggested treatment. Sarcomas can be hard to diagnose. Remember: Any good Oncologist would welcome second and third opinions

See also parent’s Video Testimonials about this disease

External links

American Childhood Cancer Organization (ACCO) – RhabdoMyoSarcoma : Visit the American Cancer Society to learn more about diagnosis, pre, during and post treatment issues and some valuable tips.
American Cancer Society
Rhabdomyosarcoma acebook page