Treatment:
For a SUMMARY of the TREATMENT Sara recieved click here.
For DETAILS read on ...
This is the treatment as we have received it and understand it. Additional information of a technical nature can be provided by your physician.
Firstly, every step of the way there will be a reassessment so as to make sure that: Sara is getting the treatment that she needs, is staying healthy enough and is not getting unnecessary treatment that is not helping.
Chemotherapy Protocols
Firstly we were told that Sara would be undergoing a very aggressive chemotherapy protocol - this is what seems to be working with DSRCT, Ewing's Sarcoma is treated similarly. And the protocol is:
| 5 Day treatment - "Etoposide-platin" | 1 to 2 Day treatment - "VAC" |
| Cysplatin | Vincristine |
| Etoposide | Adriamycin |
| Cyclophosphamide |
A change was made in Sara's chemotherapy protocol just 3 days after our initial consult with Dr. Knowling. To the platin-etoposide would be added the ifosfomide (it was not first suggested because of Sara's perscription to Paxil; but the pharmacologist said that it would be safe to add to the Paxil, it was just that ifosfomide can make people feel sleepy and give a sense of detatchment (sometimes)). Also Sara's VAC will be very High Dose.
So Sara's finalized chemotherapy protocols are :
"HD-VAC" (2 day treatment) |
"HIPE" (High dose I... P... E...) (5 day treatment) |
| Vincristine | Ifosfomide |
| Adriamycin | Platin (cysplatin in Sara's case) |
| Cyclophosphamide | Etoposide |
The treatments will alternate 5 to 8 times (i.e. 3 to 4 set sets of each protocol)
The first day of every chemo should be every three weeks.
After the third series (i.e. of both) if the tumour is small enough not to feel it then it will be time to look at harvesting stem cells.
If the tumour doesn't shrink it's not as bad as if it grows. If there is lots of fibrous material it may not shrink. Is Sara is healthy then the chemotherapy will continue. After the third or fourth series then it will be time to look at surgery.
When the doctors see a maximum response then it will be time for the
big treatment:
"ICE" chemotherapy protocol and peripheral stem cell replacment
therapy.
Risk of Infection and GCSF
Approximately 7 to 10 days after every HD-VAC protocol Sara will receive a daily series of shots of Neupogen® (filgrastim) - a GCSF (granuolite colony stimulating factor) that helps build white blood cells (neutrophils) in the body. If the number of neutrophils is too low, the body is not adequately protected from the invading bacteria.
The problem with a low neutrophil count is that chemotherapy must be delayed until the neutrophils return to a normal level. Because we want to keep Sara on schedule, and with her white cell counts dropping at approximately days 7-10 Sara will get gcsf shots each day from that point on until her counts are up so she can go onto her next chemo session.
Anti-Nausea Medications
Just even a few years ago chemotherapy was truly feared because of the sickess involved with the treatment. Now though things are much better. With the anti-nausea medication that Sara receives she is rarely, if ever, nauseated. The anti-nausea meds that Sara is getting are:
Dexamethasone (Decadron ®) |
Ondansetron (Zofran ®) |
Nabilone (THC) |
Gravol ® |
Stemitil ® |
After the first round of chemotherapy though the stemitil was dropped from Sara's anti-nausea regimen because she had a very strong reaction to it. She began to halucinate and have violent twitches and shakes and very high anxiety. It was later suggested that she try gravol ® instead because it had fewer side effects and would not create the anxious reaction that Sara had before. The reaction and anxiety were strong enough that she was perscribed Ativan ® (Lorazepam) to help alleviate the anxiety.
The Nabilone is quite excellent. Of course there is a lot of discussion about THC - should the real stuff be used or the essential THC (i.e. pot or man-made). Personally I think that it is up to the individual, although Sara has had quite a lot of success with the nabilone.
One of the most uncomfortable side effects of these drugs has been the heartburn and acid-reflux (stomach acid that burns the esophagus) but most of that was alleviated with the use of Ranitidine, a histamine blocker that helps cut down stomache acid and stops the reflux and heartburn..
Again, I am not a doctor so please make sure to ask your physician or the nursing staff wherever treatment is occuring regarding these drugs and their side effects. It has been a great help for us to know what the side effects are so as to releive any fear that the reactions/associated feelings can cause.
Stem Cell Harvest
When physicians harvest bone marrow for use in a transplant, it is the stem cells they are seeking. Stem cells resemble medium sized white blood cells. Stem Cell Harvesting is like dialysis - the harvester looks at cells in the blood as they go by and removes them with a laser and then saves them to be given back whenever Sara's cells come back. The PSCH is painless. Patients occasionally experience , coldness, numbness around the lips, or cramping in the hands during the harvest. The procedure is usually performed on an outpatient basis over a one- to two-week period. After each session, the stem cells are frozen using a process called cryopreservation.
Sara's stem cell harvest was performed over two days in the week following her 3rd chemotherapy session. Instead of waiting the 7-10 days she started the gcsf shots right away. This created an abundance of stem cells in her bone marrow (as a matter of fact most of her discomfort was that her bones were 'almost to the bursting point with marrow') and when there are that many cells then they move out into the peripheral blood - hence the term peripheral stem cell harvest (PSCH).
Surgery
Sara did under go surgery three and a half weeks after her third chemotherapy treatment was completed.
The surgery was to remove the two tumours from the abdominal wall, remove the greater omentum (the fat curtain of the belly) and to look around and see if there is anything else that looks malignant.
After the laperotomy the surgeon (Dr. McGregor) found no suprises but did have to remove a small bit of the bowel as well as the tumours and the omentum- but nothing that Sara would miss.
Sara spent one week in the surgical step down unit and then two days on the ward before coming home but Dr. McGregor felt that everything was going great.
Most importantly the tumour had shrunk dramatically from its exposure to the chemotherapy protocols. So the next step will be 1 more cycle of the chemotherapy (i.e. one each of the "HIPE" and "VAC" protocols) followed by an ifosphomide/ platin/ etoposide protocol for the Stem Cell Replacement:
High Dose Chemotherapy
and Peripheral Stem Cell Replacement:
- a high dose chemotherapy (ifosphomide/ platin/ etoposide) and total body irridation that has the side-effect of wiping out bone-marrow. This treatment will involve a hospital stay as short as 17 days to as long as 35 days (February or March 1998). BUT all this depends on the tumour's reaction to chemotherapy, surgery, etc.
The whole point of this protocol is to clean up any floating DSRCT cells that are left in the body. The aggresiveness of this treatment will wipe out Sara's bone marrow but Sara's bone marrow biopsy showed perfectly healthy bone marrow so there should not be any difficulty in getting the stem cells to graft back into Sara's bones.
And then, after all of this Sara should be in remission. As of late December, 1997 I have just found another article abstract and it states that people who have had a similar protocol to Sara's were those showing complete responses: "The regimens associated with complete responses were essentially those using doxorubicin [Adriamycin], cyclophophamide, vincristine, and cisplatin" (see article)
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