This is my informal collection of ASPS "success" stories - in the hopes it may helpful for some of you trying to make decisions. Because this is a rare cancer, the cases are collected over the course of years and improvements in imaging, surgical technique, and chemotherapy have to be factored in. It seems as if lifetime surveillance is the safest - as delayed metastases can occur more than a decade out from the last visualized tumor.
NED = No Evidence of Disease
I looked for either complete remission or stable disease out to 5 years at least. Some case series were excluded from this analysis because they only followed patients out NED for 3-4 years. I also only collected information from papers that I had access to and know that some papers reference other long survival cases with multimodal treatments.
There may also be a slew of individual factors like tumor size and number, location, age, gender, immune response, and prayer, but in the event that some information is better than none, here goes!
Complete Remission (NED) of Stage IV / Metastatic ASPS
(usually this means primary tumor + lungs)
Surgery only:
- Case Series (follow up 2-18 yrs; median 5.6 yrs) Thoracotomies
UK; Judson ave 5.6 years
Patient 1- disease-free with thoracotomy
Patient 2-
Patient 3-
Patient 4-
Barry Young 16 years out Thoracotomy x 3 (refused chemo & XRT)
- Case Report 12 years Thoracotomy
Lillehei; U Colorado (did develop metastases at 12 yrs)
Chemo + Surgery..but Surgery Rendered NED?
- Case Series
Patient 1- 20 years out Thoracotomies x 8 history of chemo
Patient 2- 20 years Laparotomies history of XRT;at 30 years, new liver
Patient 3- 11 years Thoracotomies x 2 history of chemo, XRT to lungs
Sloan-Kettering; Kayton
- Nancy Debolt 8 years out chemo failed, Gemzar (PR), thoracotomy
- Tammy 22 years surgery, rapid regrowth, chemo, stable disease , surgery for NED
Vincristine, atinomycin, cytoxan, adriamycin, cisplatin
Chemo + Surgery, but Chemo to Render NED?
- Camilla 24 years intra-arterial chemo, incomplete thoracotomies, chemo 2 1/2 yrs
Adria, cisplatin, DTIC
- Case Report 5 years thoracotomy with positive margins, then chemo 2 yrs
vincristine, actinomycin D, cytoxan doxorubicin
Baum; Northwestern
- Case Report 10 years 12 wks chemo, thoracotomy (PR to chemo), chemo 36 wks
vincristine ,cytoxan, mens, doxo; alt with etoposide, ifosfamide x 6 chemo thoracotomy
Nickerson; Mayo - our oncologist called a friend who was co-author, now says she wouldn't give chemo
Long Term Survival of Stage IV
Surgery only / or Surgery to Render Stable:
Case Report 8.2 years Thoracotomies (Tumors removed: 101, 10, 15, 4)
Japan; Kodama Brain + parotid
Andreas Kontoleon 7 years out Chemo (Dox / IFos) failed, Thoracotomies
UK; Judson (largest lung met 6 cm, lots small, feel fine) First thoracotomy removed 13 out 14 nodules. One too near vessels to operate - kept stable x 4-5 years.
Jill Kendall 16 years out Primary out + XRT (spine), Thoracotomy (stable x 3 years), Growth in Mets (Germany for hyperthermia + ICE chemo), Rapid Growth Lung Mets, Thoracotomy -
Surgery + Chemo:
Amanda 6 years surgery, rapid regrowth, chemo x almost 2 years
celebrex + vinblastine x 8 mos, off vinblastine after infection, but Celebrex x 1 year, then 3 rounds doxorubicin + ifosfamide
Conservative Rx:
Case Series: 60% stage IV, 40% 10 years (? not sure what % stage IV), "Survival after detection of metastatic disease was similar". Of 5 patients who died, average time to death was 6.2 years
Dana Farber; Anderson
15 Years Plus Club - Stage IV ASPS survivors over 15 years
some comments
1. We do not know if in Pf.Judson report people who had surgery didn't have the chemotherapy before with no visible changes on the scans so it was considered to be ineffective but might be just the same case of full/partial necrosis not detectable by scanning, ASPS mets dissolve very slowly even when they are fully necrotic as it is noted after the ablation that our people had. It would have been interesting to see tables of his study.
2. Jill Kendall lung mets were stable 3 or 2 years(?) after she had the hyperthermia chemo in Germany so may be they were partially necrotic.
3. Andreas Kontoleon had his surgery for only one lung in Vancouver, we can not say that chemo (Dox / IFos) failed, he only had two rounds before of the surgery - I can try to ask the surgeon if there was any necrosis in resected nodules but I do not think he will answer and even bother to look for the answer, Andreas moved to UK later, we lost the contact after the former web-site was redesigned.
4. Dr.Nickerson and Dr.Arndt work in two different places they just belong to the same COG and she is on the board of the COG and as I understand was reviewing his article and authorizing the publication. She also said to me at some point when I was desperately looking for the options that she doesn't believe that resection is beneficial for the multiple lung mets and that survival with the multiple ASPS lung mets can be lengthy anyways:( The same answer I've got from Dr.Pappo from the same COG although Amanda was on his clinical trial and he knew that she benefited for the intensive treatment and resection - although he might be not following her after the clinical trial ended. My point is that I do not think they know and read all we know about ASPS - they are very busy and small number of cases we have is not statistically valuable data so as the clinical researchers they are not interested in the single/anecdotal cases as they are responsible for the treatment guidelines.
I am all for the "surgery only" route as in reality it is a less toxic way but as of now (Jan.2008) I do not have any cases of long term even free survival to justify this "surgery only" approach. The only cases that I am aware of the long term event free survival (more then 10 years) stage 4 ASPS metastatic disease were after intensive chemo+surgery.
I am going to contact Andrea Ferrari from Italy and ask her if she could do an updated report for more then 10 years follow up as she is the only oncologist who persistently uses chemotherapy for the newly Dx children with non-metastatic disease and metastatic rate was lower at 5 years mark in her study.
2. Jill Kendall lung mets were stable 3 or 2 years(?) after she had the hyperthermia chemo in Germany so may be they were partially necrotic.
3. Andreas Kontoleon had his surgery for only one lung in Vancouver, we can not say that chemo (Dox / IFos) failed, he only had two rounds before of the surgery - I can try to ask the surgeon if there was any necrosis in resected nodules but I do not think he will answer and even bother to look for the answer, Andreas moved to UK later, we lost the contact after the former web-site was redesigned.
4. Dr.Nickerson and Dr.Arndt work in two different places they just belong to the same COG and she is on the board of the COG and as I understand was reviewing his article and authorizing the publication. She also said to me at some point when I was desperately looking for the options that she doesn't believe that resection is beneficial for the multiple lung mets and that survival with the multiple ASPS lung mets can be lengthy anyways:( The same answer I've got from Dr.Pappo from the same COG although Amanda was on his clinical trial and he knew that she benefited for the intensive treatment and resection - although he might be not following her after the clinical trial ended. My point is that I do not think they know and read all we know about ASPS - they are very busy and small number of cases we have is not statistically valuable data so as the clinical researchers they are not interested in the single/anecdotal cases as they are responsible for the treatment guidelines.
I am all for the "surgery only" route as in reality it is a less toxic way but as of now (Jan.2008) I do not have any cases of long term even free survival to justify this "surgery only" approach. The only cases that I am aware of the long term event free survival (more then 10 years) stage 4 ASPS metastatic disease were after intensive chemo+surgery.
I am going to contact Andrea Ferrari from Italy and ask her if she could do an updated report for more then 10 years follow up as she is the only oncologist who persistently uses chemotherapy for the newly Dx children with non-metastatic disease and metastatic rate was lower at 5 years mark in her study.
http://www.ncbi.nlm.nih.gov/pubmed/1285 ... d_RVDocSum
This study suggests that the survival after diagnosis of Mets is less with chemo then without. Althoug the time is probably statistically insignificant.
This study suggests that the survival after diagnosis of Mets is less with chemo then without. Althoug the time is probably statistically insignificant.
...Survival data were analysed of all patients who received chemotherapy and of whom data about the type of chemotherapy and response and the time of metastases were reported.
Median survival since the diagnosis of metastases for the 31 patients evaluable for survival (8 from Table 1 and 23 from Table 2) was 36+ months (range 10–132 months), with 17 of the 31 patients alive at their last follow-up. The median follow-up since primary diagnosis was 46 months (range 10–135 months).
Due to the slow rate of tumour growth and the late time of systemic spread, a different tumour biology (compared with other soft tissue sarcomas) is often proposed for ASPS. In 12 patients, a very long interval between primary diagnosis and the occurrence of systemic spread was reported, ranging from 99 to 252 months [18, 22, 23, 24 and 25]. The median survival after diagnosis of metastases of 36+ months calculated in this study and 40 months reported for ASPS [3] compares favourably with a 12 months median survival in soft tissue sarcomas in general [26].
stage 4 - role of the MTD chemotherapy without surgery
I agree with the authors that for the stage 4 ASPS chemotherapy alone (when following surgery is not feasible) given at the usual MTD (maximum tolerated dose) is a bad idea and has an adverse effect.
Dr. Judah Folkman from Harvard Medical School, a cancer research who discovered angiogenesis has explained how chemotherapy at MTD contributes to the growth of the tumors trough the induction of the increased angiogenesis so when cells are dividing slowly then there is more harm from the blood vessels growth then the benefit from the direct cytotoxic effect. He has died at the age of 74 this Tuesday.
We have seen this effect on some of our stage 4 patients when chemotherapy was given as a palliative measure but in fact it speed up the growth instead of stopping or slowing it down, so there are no examples that ASPS patients stage 4 may benefit from chemotherapy alone given at MTD, as ASPS tumors are never 100 necrotic from the chemotherapy, the partial necrosis is the best result, but if the resection later is feasible then the long disease free/events free survival cases are known. There might be a role of the metronomic chemotherapy in ASPS stage 4 as we had an anecdotal case when gemcitabine alone given for 18 month (3 weeks on one week off) resulted in regression of the lung/liver mets but the case was never documented so there is no proof and no contact information for the confirmation avail.
Dr. Judah Folkman from Harvard Medical School, a cancer research who discovered angiogenesis has explained how chemotherapy at MTD contributes to the growth of the tumors trough the induction of the increased angiogenesis so when cells are dividing slowly then there is more harm from the blood vessels growth then the benefit from the direct cytotoxic effect. He has died at the age of 74 this Tuesday.
We have seen this effect on some of our stage 4 patients when chemotherapy was given as a palliative measure but in fact it speed up the growth instead of stopping or slowing it down, so there are no examples that ASPS patients stage 4 may benefit from chemotherapy alone given at MTD, as ASPS tumors are never 100 necrotic from the chemotherapy, the partial necrosis is the best result, but if the resection later is feasible then the long disease free/events free survival cases are known. There might be a role of the metronomic chemotherapy in ASPS stage 4 as we had an anecdotal case when gemcitabine alone given for 18 month (3 weeks on one week off) resulted in regression of the lung/liver mets but the case was never documented so there is no proof and no contact information for the confirmation avail.
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Fictional
Re: Treatment Success in Stage IV ASPS - NED & Stable Diseas
I was looking at this thread again because of our surgeons' latest interest in deferring operation on the our daughter's other lung. She apparently is still resectable, but they don't want to take more lung if they don't have to - and one is in the middle of the right middle lobe, so she would have to lose that entirely if we were to try for complete resection. None of them are located in a dangerous position and sizes range from 2-6 mm.
So we are sifting through the possibility of med options again. The growth in her nodules has definitely slowed since immediately after resection of the primary (that may be because of the a rebound effect - large primary can inhibit mets may be through endostatin or similar factors), but unclear if natural history of disease or her current ARQ197 + celebrex, and as mentioned in our other update, finally no new nodules at least with the latest scan.
I was heartened to read Andreas Kontoleon's course (only 1 lung operated on) and because he was a doctor, I did a search on his name. It seems he is quite active in his career and on the faculty at the University of Cambridge. He had a book published this year (2008). From the alveolarspsarcoma.net registry, he reported his original diagnosis (stage IV) was in 1994. So he must be 13-14 years out. Lung nodules occurred in the same year of his original diagnosis.
I have also heard the idea that the thoracotomy process itself may slow the disease - because the surgery and recovery induces a strong inflammatory response in the lungs. Some of this benefit could be whether the operation was unilateral or bilateral.
So we are sifting through the possibility of med options again. The growth in her nodules has definitely slowed since immediately after resection of the primary (that may be because of the a rebound effect - large primary can inhibit mets may be through endostatin or similar factors), but unclear if natural history of disease or her current ARQ197 + celebrex, and as mentioned in our other update, finally no new nodules at least with the latest scan.
I was heartened to read Andreas Kontoleon's course (only 1 lung operated on) and because he was a doctor, I did a search on his name. It seems he is quite active in his career and on the faculty at the University of Cambridge. He had a book published this year (2008). From the alveolarspsarcoma.net registry, he reported his original diagnosis (stage IV) was in 1994. So he must be 13-14 years out. Lung nodules occurred in the same year of his original diagnosis.
I have also heard the idea that the thoracotomy process itself may slow the disease - because the surgery and recovery induces a strong inflammatory response in the lungs. Some of this benefit could be whether the operation was unilateral or bilateral.
Re: Treatment Success in Stage IV ASPS - NED & Stable Diseas
I want to add what I know about Andreas case from our personal communication. He was treated in Vancouver and his thoracic surgeon was the same that supervises Ivan's thoracic situation here in Vancouver - Dr.Evans. He had two courses of the chemotherapy before of the surgery and I do not know if resected nodules were found to be a viable tissue or necrotic, but the resection was incomplete even in the resected lung were more small nodules visible that were not resected due to anticipated loss of the lung tissue - centrally located. I do not know if he ever had any other metastatic events - other locations besides lungs and if the remaining nodules in the other lung are still stable/or removed now...I would love to hear from him as he supported us very much in the beginning of our ASPS (and the other patient from UK Barry who had a few lung surgeries as the only treatment). I was trying to contact Andreas but got no answer - may be he is just enjoying by having his normal life?
But his case is rather exceptional when nodules are stable for such a long time, unless he happen to be an extremely chemosensitive and they are completely necrotic (as we know necrotic nodules can stay undissolved forever and be seen on the CT scan). Two of the biggest nodules on Ivan's lung operated recently second time by Dr.Rolle were completely necrotic as well, he even didn't know that when he resected them and they were found necrotic by the pathologist.
I wouldn't go for the total lobe resection in such a young age but also to leave it there means the possibility of the secondary dissemination and the possibility to loose this "solitary metastasis" status - when mets are confined to the single organ (lungs) - that opens the road for the lung surgery, it can change at once if there anything elsewhere. I would strongly suggest you to contact Dr.Rolle to inquire about possibility that he takes 'K' for the surgery. He doesn't operate on children and German health system is very strict, but may be an exception can be done for the case when his technology is unique in what 'K' needs now - he most probably can do it with no loss of the lobe and his technology is exactly what she needs now and he does it every day - he already operated on a big number of the ASPS patients, also unfortunately he had to refuse a few of the ASPS patients when the centrally located mets overgrow the size that there is a room for the laser to circle around it and they in the contact with the central blood vessels, so if you are interested in his option you would need to contact him now in order not to loose it - although as I said I know that he only does adults but being a head of the surgery of his hospital he might have some flexibility here.
I also support the idea that physical removal of the ASPS mets is beneficial for the overall course of disease and I feel its benefit is may be in the increased immunocompetence which is suppressed by some of the ASPS producing factors.
But his case is rather exceptional when nodules are stable for such a long time, unless he happen to be an extremely chemosensitive and they are completely necrotic (as we know necrotic nodules can stay undissolved forever and be seen on the CT scan). Two of the biggest nodules on Ivan's lung operated recently second time by Dr.Rolle were completely necrotic as well, he even didn't know that when he resected them and they were found necrotic by the pathologist.
I wouldn't go for the total lobe resection in such a young age but also to leave it there means the possibility of the secondary dissemination and the possibility to loose this "solitary metastasis" status - when mets are confined to the single organ (lungs) - that opens the road for the lung surgery, it can change at once if there anything elsewhere. I would strongly suggest you to contact Dr.Rolle to inquire about possibility that he takes 'K' for the surgery. He doesn't operate on children and German health system is very strict, but may be an exception can be done for the case when his technology is unique in what 'K' needs now - he most probably can do it with no loss of the lobe and his technology is exactly what she needs now and he does it every day - he already operated on a big number of the ASPS patients, also unfortunately he had to refuse a few of the ASPS patients when the centrally located mets overgrow the size that there is a room for the laser to circle around it and they in the contact with the central blood vessels, so if you are interested in his option you would need to contact him now in order not to loose it - although as I said I know that he only does adults but being a head of the surgery of his hospital he might have some flexibility here.
I also support the idea that physical removal of the ASPS mets is beneficial for the overall course of disease and I feel its benefit is may be in the increased immunocompetence which is suppressed by some of the ASPS producing factors.
Olga
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Fictional
Re: Treatment Success in Stage IV ASPS - NED & Stable Diseas
Thanks, Olga.
I think we would consider this, but we also are weighing the risk of dissemination.
Charity's experiences makes me pause. I know all of our cases are different, but Charity sought to resect all visible lung disease with laser treatment, but she has struggled since with both lung recurrence and spread to other organs since the laser treatment with Dr. Rolle.
Surgical removal with the double lines of staples and surgical knife in-between would seem to provide a low risk of dissemination. At least to my way of thinking. I don't know whether some of the other ablative techniques (RFA, laser) could run more risk of microscopic spread.
I do agree with your point about MTD and increased risk. From reading other patient cases, it seems that if patients were immunosuppressed, they could be at more risk for accelerated disease. The only medical options we would seriously consider at this point in time with our daughter are promising agents with little or no immunosuppression. We also do not want to be involved in phase I dose escalation studies for the reasons you mentioned.
I think we would consider this, but we also are weighing the risk of dissemination.
Charity's experiences makes me pause. I know all of our cases are different, but Charity sought to resect all visible lung disease with laser treatment, but she has struggled since with both lung recurrence and spread to other organs since the laser treatment with Dr. Rolle.
Surgical removal with the double lines of staples and surgical knife in-between would seem to provide a low risk of dissemination. At least to my way of thinking. I don't know whether some of the other ablative techniques (RFA, laser) could run more risk of microscopic spread.
I do agree with your point about MTD and increased risk. From reading other patient cases, it seems that if patients were immunosuppressed, they could be at more risk for accelerated disease. The only medical options we would seriously consider at this point in time with our daughter are promising agents with little or no immunosuppression. We also do not want to be involved in phase I dose escalation studies for the reasons you mentioned.
Re: Treatment Success in Stage IV ASPS - NED & Stable Diseas
May be Charity would like to comment herself, but her disease was disseminated before of the laser assisted surgery. She had been Dx with the brain mets and Dr.Rolle accepted her for the surgery only after she had her brain mets treated. So I suspect that the disease was disseminated not by the lung surgery but in lieu of surgery, because she was having multiple lung mets for a few years already before of the surgery. When lung mets reach the certain size, they grow their own blood supply and able to disseminate (there is a few related articles on that). Laser assisted surgery is a very clean type of the surgery as all the residual fluids and tissues are evaporated by the laser so there is no spill over - they suck the fumes instead. There is almost no blood for the first time surgery (on a clean not operated before lung with no adhesions and scars), Ivan's blood collection on the first surgery was 50 ml for the 4 hours surgery.
Any multiple pulmonary metastasectomies are unfortunately at very high risk for the recurrences which mostly are not the local disseminations but the continuous of the process of the growth these mets that were less then 0.5 at the time of the surgery (or were missed by the surgeon due to the long surgery and a stiff lung). In some cases it may be makes a sense to remove entire lower lobe if there are very multiple mets as it is almost impossible to resect them all, paradoxically, the more mets are resected, the more mets are missed. There were some published studies about the margins in the laser assisted resection http://www.ncbi.nlm.nih.gov/pubmed/9596326 but they are not totally relevant as this is not the same wave length laser and its physical properties may differ.
Any multiple pulmonary metastasectomies are unfortunately at very high risk for the recurrences which mostly are not the local disseminations but the continuous of the process of the growth these mets that were less then 0.5 at the time of the surgery (or were missed by the surgeon due to the long surgery and a stiff lung). In some cases it may be makes a sense to remove entire lower lobe if there are very multiple mets as it is almost impossible to resect them all, paradoxically, the more mets are resected, the more mets are missed. There were some published studies about the margins in the laser assisted resection http://www.ncbi.nlm.nih.gov/pubmed/9596326 but they are not totally relevant as this is not the same wave length laser and its physical properties may differ.
Olga
Re: Treatment Success in Stage IV ASPS - NED & Stable Diseas
Contributing to the discussion of why mets may stabilize after surgery. I read a recent article on general anesthetics causing more pain after surgery. The article It basically said that some general anesthetics cause an imflamatory response while others do not. This response leads to more pain/swelling post surgery but also has the effect of causing an immune response. This immune response has the positive effect of limiting infections after surgery.
How does this tie into cancer?
My theory is thus. The anesthetic inflames the lung tissues and causes an immune response. In some patients this immune response leads to a slowing of the lung METs growth due to an immune reaction. This could be a factor in the slowed growth of 'F''s daughters lung modules. After, my son's lung biopsy which was shortly after the removal of his primary tumor the lung nodules continued to grow. After, the resection for material for vaccine trial (from lungs) the lung mets came to a screeching halt and have not moved since then. Perhaps a combination of a combination of anesthetic and vaccine? Or anesthetic alone? Or vaccine alone?
I wrote Dr. Goldberg and mentioned my theory to him. Since, the anesthetics that cause imflamation vs. those that don't are known, and ancedotal evidence shows that surgery alone may cause slowing/stopping/shrinkage of met growth, I would like to see a study of anesthetic vs. met growth after surgery. I suppose this could be gleaned using information already in patients charts.
On a different note I was reading a book about Good Germs, Bad Germs it makes reference to one William Coley who pioneered the use of bacterial vaccines for treating sarcomas. The vaccine was endorsed by the American Medical Association in 1936 but fell out of favor with the rise of radiation and chemo. I hope to look up some info about this, hopefully with clinical trials. Did they have clinical trials in 1936? Since, radiation and chemo don't seem to be effective for us maybe this should be dusted off.
Enough of my late night ramblings.
How does this tie into cancer?
My theory is thus. The anesthetic inflames the lung tissues and causes an immune response. In some patients this immune response leads to a slowing of the lung METs growth due to an immune reaction. This could be a factor in the slowed growth of 'F''s daughters lung modules. After, my son's lung biopsy which was shortly after the removal of his primary tumor the lung nodules continued to grow. After, the resection for material for vaccine trial (from lungs) the lung mets came to a screeching halt and have not moved since then. Perhaps a combination of a combination of anesthetic and vaccine? Or anesthetic alone? Or vaccine alone?
I wrote Dr. Goldberg and mentioned my theory to him. Since, the anesthetics that cause imflamation vs. those that don't are known, and ancedotal evidence shows that surgery alone may cause slowing/stopping/shrinkage of met growth, I would like to see a study of anesthetic vs. met growth after surgery. I suppose this could be gleaned using information already in patients charts.
On a different note I was reading a book about Good Germs, Bad Germs it makes reference to one William Coley who pioneered the use of bacterial vaccines for treating sarcomas. The vaccine was endorsed by the American Medical Association in 1936 but fell out of favor with the rise of radiation and chemo. I hope to look up some info about this, hopefully with clinical trials. Did they have clinical trials in 1936? Since, radiation and chemo don't seem to be effective for us maybe this should be dusted off.
Enough of my late night ramblings.
Re: Treatment Success in Stage IV ASPS - NED & Stable Diseas
Over the next 45 years, until the end of Coley's medical career in
1936, thousands of patients were treated with Coley's toxin. Coley
gained extensive experience in the treatment of a large variety of
malignant diseases, including soft tissue sarcomas, lymphomas,
osteosarcomas, Ewing's sarcomas, and malignant melanomas. He
also treated cervical, ovarian, testicular, renal, breast, and colorectal
carcinomas. The best response by far was achieved in patients with
inoperable soft tissue sarcomas; long-term (more than 5 years)
disease-free survival was achieved in approximately 50% of these
patients. Carcinomas, on the other hand, responded poorly to the
treatment, and Coley concluded that the use of the toxin should be
limited to sarcomas.
http://ima.org.il/imaj/ar02june-24.pdf
1936, thousands of patients were treated with Coley's toxin. Coley
gained extensive experience in the treatment of a large variety of
malignant diseases, including soft tissue sarcomas, lymphomas,
osteosarcomas, Ewing's sarcomas, and malignant melanomas. He
also treated cervical, ovarian, testicular, renal, breast, and colorectal
carcinomas. The best response by far was achieved in patients with
inoperable soft tissue sarcomas; long-term (more than 5 years)
disease-free survival was achieved in approximately 50% of these
patients. Carcinomas, on the other hand, responded poorly to the
treatment, and Coley concluded that the use of the toxin should be
limited to sarcomas.
http://ima.org.il/imaj/ar02june-24.pdf
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Fictional
15 Years Plus Club - Stage IV ASPS survivors over 15 years
OK, this is for Amanda and anyone else who might like to know. I found both Jill Kendall (married and now last name hyphenated) and Virginia Oldaker on Facebook and they were kind enough to answer my questions. More about them and Andreas is available on the remnants of the old alveolarspsarcoma.net database. More details about Clare, Tammy, and Camilla are within this forum (use the search box in the upper right hand corner)
ASPS 15years + Club
Virginia Oldaker ASPS in 1993 – 17 years out – age 34 when diagnosed
early chemo – tumors grew faster – repeated surgeries over the years
Clare Clarke Diagnosed 1994 – 16 years out - age 24 when diagnosed
Thoracotomies, deep lung tumor unresectable, early TKI, HDAC, Cediranib, then stopped
Jill Kendall diagnosed 1991 – 19 years out – age 16 when diagnosed
multiple surgeries, chemo “didn’t work” early on – told she has “dormant tumors everywhere”
Andreas Kontoleon diagnosed 1994, 16 years out – 22 when diagnosed
thoracotomies – tumor left behind, alternative health – Essiac tea, etc. He was very nice, busy with work and his family and traveling. Believed a lot in good diet, exercise, etc.
Barry Young diagnosed 1988 – 22 year out, 21 when diagnosed
only surgeries
Tammy 34 years out (now 47 yo) stage IV at diagnosis, surgery, radiation,chemo, then thoracotomies –
Camilla Collins, diagnosed in 1983, stage IV at diagnosis, 13 years old
surgeries, the 2.5 years of chemo
Our covering peds onc (older guy semi-retired) in Oregon told us when he lived in Kansas he was following a 45 yo woman in Kansas who had had repeated thoracotomies and ASPS since the age of 13. He recommended not doing anything ‘toxic’
There are many more in the 5-10 year plus club too, of course.
ASPS 15years + Club
Virginia Oldaker ASPS in 1993 – 17 years out – age 34 when diagnosed
early chemo – tumors grew faster – repeated surgeries over the years
Clare Clarke Diagnosed 1994 – 16 years out - age 24 when diagnosed
Thoracotomies, deep lung tumor unresectable, early TKI, HDAC, Cediranib, then stopped
Jill Kendall diagnosed 1991 – 19 years out – age 16 when diagnosed
multiple surgeries, chemo “didn’t work” early on – told she has “dormant tumors everywhere”
Andreas Kontoleon diagnosed 1994, 16 years out – 22 when diagnosed
thoracotomies – tumor left behind, alternative health – Essiac tea, etc. He was very nice, busy with work and his family and traveling. Believed a lot in good diet, exercise, etc.
Barry Young diagnosed 1988 – 22 year out, 21 when diagnosed
only surgeries
Tammy 34 years out (now 47 yo) stage IV at diagnosis, surgery, radiation,chemo, then thoracotomies –
Camilla Collins, diagnosed in 1983, stage IV at diagnosis, 13 years old
surgeries, the 2.5 years of chemo
Our covering peds onc (older guy semi-retired) in Oregon told us when he lived in Kansas he was following a 45 yo woman in Kansas who had had repeated thoracotomies and ASPS since the age of 13. He recommended not doing anything ‘toxic’
There are many more in the 5-10 year plus club too, of course.
Re: 15 Years Plus Club - Survivors with Stage IV ASPS over 15yrs
'F' ty! <3
I needed this i am still in shock and also in a disbeliefe right now with myself and to be honest having some problems with it believe it or not
I feel like i am waking from a dream and it was bad and i just cant get it out of my mind *sigh* maybe others have also felt like this and will post back...
Dr Foshag said it is time to cry now and let it go...
Well, i have 14 years and 363 days till i can make the 15 year club and i do not think i have ever wanted to be a member of any thing as much as this!
I needed this i am still in shock and also in a disbeliefe right now with myself and to be honest having some problems with it believe it or not
I feel like i am waking from a dream and it was bad and i just cant get it out of my mind *sigh* maybe others have also felt like this and will post back...
Dr Foshag said it is time to cry now and let it go...
Well, i have 14 years and 363 days till i can make the 15 year club and i do not think i have ever wanted to be a member of any thing as much as this!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: 15 Years Plus Club - Survivors with Stage IV ASPS over 15yrs
I actually have not heard anything from Barry Young for a long time now...The rest of the folks checks in once in a while, some of them have posts here elsewhere, but it is a good summary for a newly registered people to know.
Olga
Re: 15 Years Plus Club - Survivors with Stage IV ASPS over 15yrs
Thanks for this information. Still wondering what the common denominator is for long term surv. since
sadly we have lost some members. It does seem important to be with a sarcoma specialist and stay proactive
so surgeries are options. However, it is great we have some new trials out there for ASPS pt. to participate in too.
Peace and Blessings,
Cindy
sadly we have lost some members. It does seem important to be with a sarcoma specialist and stay proactive
so surgeries are options. However, it is great we have some new trials out there for ASPS pt. to participate in too.
Peace and Blessings,
Cindy
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 15 Years Plus Club - Survivors with Stage IV ASPS over 15yrs
Dear 'F',
Thank you for all of your research, time, and effort in gathering and compiling this very important information and sharing it with the Board. The number of long term survivors provides a bright beacon of Hope and encouragement for all of us in the ASPS Community who are continuing to fight this very challenging battle with this insidious disease. It would be wonderful if there were a common denominator and easy answer which could be determined for ensuring long term survival, but heartbreakingly thus far we have not been able to find one since this disease is so unpredictable and seems to vary with each individual patient. We do know that it is critically important to be very pro-active, to aggressively research and continuously communicate and network with other ASPS patients, and to be as knowledgeable as possible in making treatment decisions. Since during the past almost nine years of Brittany's courageous battle there were only a very few isololated seemingly successful responses to the available traditional systemic treatments, we had always tried to treat Brittany's disease with surgical removal, ablation, or radiotherapy of the mets, and avoided any kind of "toxic" treatment, as is the philosophy of long term survivor Barry White ( I still see Barry's name pop up on my AOL Buddy List every once in awhile which is an indication that he is still active on AOL, but disappointingly and inexplicably, he hasn't responded to any of my e-mails for the past several years). However, when Brittany developed a met in the head of her pancreas which cannot be resected, ablated, or treated with radiosurgery, we had no choice except to pursue a systemic treatment to try to shrink/destroy it, and to stabilize the increasing very aggressive progression of the disease. Thankfully, Cediranib had just recently become available in Clinical Trial, Brittany was accepted into the Trial, and she has had a very positive response to the medication thus far. We of course realize that Cediranib is probably not a complete cure for this disease, but we are immensely grateful for the disease stabilization and tumor shrinkage that this promising new medication has provided thus far during the past almost year of Brittany's treatment with it, and we are holding VERY tight to Hope that it will continue to provide stabilization of the disease and to shrink/destroy the existing mets until a permanent cure can be found. Hopefully through the continued ASPS research, that cure WILL be found sometime VERY soon.
With special caring thoughts and continued Hope,
Bonni
Thank you for all of your research, time, and effort in gathering and compiling this very important information and sharing it with the Board. The number of long term survivors provides a bright beacon of Hope and encouragement for all of us in the ASPS Community who are continuing to fight this very challenging battle with this insidious disease. It would be wonderful if there were a common denominator and easy answer which could be determined for ensuring long term survival, but heartbreakingly thus far we have not been able to find one since this disease is so unpredictable and seems to vary with each individual patient. We do know that it is critically important to be very pro-active, to aggressively research and continuously communicate and network with other ASPS patients, and to be as knowledgeable as possible in making treatment decisions. Since during the past almost nine years of Brittany's courageous battle there were only a very few isololated seemingly successful responses to the available traditional systemic treatments, we had always tried to treat Brittany's disease with surgical removal, ablation, or radiotherapy of the mets, and avoided any kind of "toxic" treatment, as is the philosophy of long term survivor Barry White ( I still see Barry's name pop up on my AOL Buddy List every once in awhile which is an indication that he is still active on AOL, but disappointingly and inexplicably, he hasn't responded to any of my e-mails for the past several years). However, when Brittany developed a met in the head of her pancreas which cannot be resected, ablated, or treated with radiosurgery, we had no choice except to pursue a systemic treatment to try to shrink/destroy it, and to stabilize the increasing very aggressive progression of the disease. Thankfully, Cediranib had just recently become available in Clinical Trial, Brittany was accepted into the Trial, and she has had a very positive response to the medication thus far. We of course realize that Cediranib is probably not a complete cure for this disease, but we are immensely grateful for the disease stabilization and tumor shrinkage that this promising new medication has provided thus far during the past almost year of Brittany's treatment with it, and we are holding VERY tight to Hope that it will continue to provide stabilization of the disease and to shrink/destroy the existing mets until a permanent cure can be found. Hopefully through the continued ASPS research, that cure WILL be found sometime VERY soon.
With special caring thoughts and continued Hope,
Bonni