1.5ml vial with coley's toxins
CancerWife had 15 injections of Coley's toxins
from 9 August 2010 to 9 September 2010
at
Oasis of Hope Hospital Paseo Playas No.19. Playas de Tijuana (aka Contreras Clinic)
in Mexico, $8000 or more
This is a record of the blogreport until CancerHusband's blog stopped...
They got coley's toxins supply and now are doing it at home by themselves for no money ... and have to keep quite about it because of doctors, pharma FDA mafia.
http://www.google.com/search?q=cancerwife.com
0.3ml syringe (originally for diabetes) -- cancerwife did not use a syringe but used a drip, a port, an infusion
The standard protocol starting dose recommended is 0.001ml
First injection. (INFUSION actually)
== DOSE 0.0005ml ==
Coley's Toxins IV #1 - Our adventure begins
Submitted by CancerHusband on Mon, 08/09/2010 - 21:20
We had brought a large body-sized far-infrared heating pad to warm her, as well as smaller one for her chest. I kept her under blankets and turned up the room thermostat to 80F. We did this to take the edge of the chills and shakes, as well as to reduce energy requirements by the body to raise core temperature.
1.5 hours after infusion, she began experiencing chills. We cranked up the heat, in order to fend off more extreme chills and the shakes. That worked very well. Shortly after cranking up the heat, her chills all but disappeared. Then, 45 minutes after onset of chills, her temperature reached 102.1F.
So then, it seems that our very first infusion, at 1/2 the typical starting dose managed to induce fever! The actual time above 102.5F was probably not more than 15 minutes. So, it wasn't a very strong response, but a good response nevertheless.
Some observations:
Her pulse peaked at 117
Her face was flush red
Her minimum blood pressure was a drop to 102/54 about an hour before the chills happened (during the pre-warming phase)
She felt some bone pain in the hip and some soreness in the back. These were very minor.
Generally, we felt that our very first Coleys went as well as one could ask for. We achieved fever in the target range and there were no complications! Overall, the entire fever process took about 6 hours, after which she felt 100% back to normal.
== DOSE 0.0005ml ==
Coley's Toxins IV #2 - Substantial fever attained!
Submitted by CancerHusband on Wed, 08/11/2010 - 21:46
Today, we stuck with the same 0.0005mL CFIV dosage. We expected that there may not be any fever today because we're using the same dosage as past Monday's. If you remember, Monday's fever broke past the 102.5F barrier for only 15 minutes. Furthermore, the body is supposed to get more tolerant to Coleys so one would expect a lower fever than expected this time.
However.... to our pleasant surprise, today's fever was a robust one. Chills began almost like clockwork at 1 hour after start of infusion (this is what the MBVax documentation also says).
Her temperature hit 102.5F at 45 minutes after onset of chills. Thereafter, the fever was long and robust. In all, it stayed above 102.5F for a full 2.5 hours. Furthermore, it stayed above 103F for over an hour, reaching a peak of 103.5F.
One unexpected side effect today was she experienced a few minutes shortness of breath. We notified the nurse just in case. The nurse seemed to have seen this before and immediately hooked up an oxygen cannula, running at 1.5 LPM.
Generally, we observed that she sweated quite intensely today. This may have been due to the more aggressive pre-warming (higher heat pad settings, higher room thermostat setting, more blankets). To compensate, I made sure that she consumed more oral electrolytes.
So, it would seem that more aggressive pre-warming may potentially have contributed to a more intense generation of fever? An alternate explanation is she wasn't feeling very strong before commencing Monday's first dosage. Perhaps that would be a more apt explanation for today's higher fever (with same dosage).
Summary: Today's was an extremely successful fever. However, we're curious why it was better than Monday's despite staying at the same dose level.
== DOSE 0.0005ml ==
Coley's Toxins IV #3 - Learning to avoid dehydration during pre-heating
Submitted by CancerHusband on Fri, 08/13/2010 - 21:16
Looking back at today's treatment, we concluded that we have been too aggressive with the heating pads. In our enthusiasm to avoid the chills and shakes that Coley's induces, we've been aggressively pre-heating her to the extent that she began sweating profusely even before the fever started.
This inadvertently led to significant dehydration, which manifested as flushing of face, low blood pressure (as low as 108/43), and requiring oxygen to alleviate shortness of breath.
The doctor had her feet raised and ordered an IV drip of Hartmann Solution to counter the dehydration and hypotension.
She eventually stabilized and the blood pressure rose. Shortly thereafter, she was able to achieve a fever. However, the fever stayed mainly between 101 and 102F. There were only 2 extremely transient peaks where her temperature managed to exceed the 102.5F target threshold. These peaks lasted for a few minutes, dropping thereafter.
It is our conclusion that the significant dehydration probably robbed her body of the necessary energy to mount a proper fever response today. The 2 transient peaks were indicative of her body trying to raise temperature but "running out of steam".
After her fever peaked and died down, she was, as before, able to get up and enjoy a meal. Her appetite was good and she felt normal, except for being a little tired (The picture below is of her enjoying her post-fever dinner).
For the next Coley's, we plan to alter strategy and go easier with the pre-heating. It'll be interesting to see if that doesn't prematurely tire her body out as much, and therefore help her achieve a higher fever.
== DOSE 0.0005ml ==
Coley's Toxins IV #4 - On the right track
Submitted by CancerHusband on Mon, 08/16/2010 - 21:15
She was rather tired over the weekend. The Issels doctors prescribed IV protein + Magnesium to replenish her (a CBC done on Saturday morning showed that her protein levels had dropped to 5.8 g/dL (normal minimum being 6.0). The doctor had already predicted it may happen before the CBC was done. The doctor said that drops in protein levels may happen when you have fevers. This, by the way, is one of the advantages of doing Coleys at a place that has a long legacy of doing immunotherapy.
Anyway, the doctors think that her tiredness on Sunday was probably due to her body replenishing after the draining fevers. We decided then to stick with the same CFIV dosage (0.0005mL) and see what temperature she'll achieve with less aggressive pre-heating.
As usual, we had our breakfast from 830-930am. However, after last week's experiences, we concluded there was no way that the Coley Fluid infusion would begin on time at around 11am (The MBVax protocol calls for 2 hours of no food prior to start of IV). Thus, I advised her to eat a good breakfast, knowing that she'll have no lunch.
As it turns out, today's Coley's began even later. By the time we got the diluted solution hooked up to her PICC port, it was about 2:00pm. By that time, it was 5 hours after breakfast and she was already getting hungry. I started her on the oral electrolytes to keep her energy up (there's a good amount of sugar in there).
As planned, we kept the heat pad on a lower setting and modulated other variables such as the number of blankets and room thermostat. Our guiding principle was to keep her warm but avoid making her sweat.
Things went slow and there was no indication of chills or fever for quite a while. But about 2 hours after infusion start, her hands began to feel tingly and she felt some light chills. This seemed to be a delayed response as compared to previous weeks, but nevertheless a response. At 4:30pm her temperature broke through to 102.7F and stayed above 102.5 until 6:00pm. As we had hoped for, she experienced no dehydration, no major drop in blood pressure, no need for oxygen, no flushing of the face. We were ecstatic. Furthermore, she only needed to drink a little over 2 cups of the oral electrolyte formula (as opposed to 6 cups last Friday).
Overall, today's fever was a successful one. 1 1/2 hours above 102.5, with a peak of 102.9F. Not a very high fever, but still a good one. One should also note that the fever was significantly higher than last Friday's treatment, although at the same CFIV dose level. This further corroborates our thinking that dehydration robs the body of energy to mount a good fever.
As aforementioned, there were few unpleasant side effects, the primary one being tiredness and fatigue. The main thing though is it seems we've figured out a very important guideline - which is to avoid sweat (and consequently dehydration) during pre-heating.
== DOSE 0.00075mL ==
Coley's Toxins IV #5 - First dose increase (to 0.00075mL)
Submitted by CancerHusband on Wed, 08/18/2010 - 17:06
Today, we increased the dosage from 0.0005mL by 50% to 0.00075mL. Those of you familiar with the MBVax protocol will note that this is still less than the typical starting dose of 0.001mL. The reason why we're treading cautiously is from previous experience with various drugs and chemo. She just tends to react quite strongly to typical dosages (even those adjusted for body weight).
Coley Fluid infusion started at 12:30pm. The first sign of chills occurred about 45 minutes later. By 3:15pm, her temperature broke through to 102.6F. It stayed there for a little over an hour. The highest point being 102.7F.
Compared to Monday's fever, this one was a tad lower (Monday's highest was 102.9, with 1.5 hours above 102.5 threshold). This may indicate a need to increase the dosage to 0.001ml next.
Also, a new development today was her pulse rate reached a peak of 130 (10 points higher than Monday's highest). This is a first. I notified the nurse who contacted the doctor. The doctor didn't seem concerned but ordered IV hydration. I'm guessing the doctor thinks the elevated pulse is probably due to dehyration.
Overall, she felt pretty good throughout the fever. The primary symptom, again, was fatigue. Again, she had some slight coughing (coming from the diaphragm). The doctor said that it's most likely due to inflammation caused by the fever.
Even though she felt pretty good throughout the fever, she was quite tired out at the end of the day. Not enough energy to go down to dinner so I brought food up from the cafeteria. We'll see how she feels tomorrow.
== DOSE 0.00075mL ==
Coley's Toxins IV #6 - Looks like it's time to increase dosage more aggressively
Submitted by CancerHusband on Fri, 08/20/2010 - 17:26
Today, it took almost 2 hours before there was any rise in temperature at all. However, she eventually developed fever, although it was clear that the temperature rise was not as fast and as high as previous treatments. She also experienced some light chills at that time.
Three hours after infusion start, she reached 102.6F. This lasted for barely an hour. Also, her peak was 102.7F. She also tolerated the fever very easily and didn't feel much discomfort, except for the fatigue that's always most prominent during fever peak.
As in the past 2 treatments, we kept the heating pads to a minimum and avoided making her sweat before onset of chills of fever. We also observed that she began to sweat during the cool-down phase of the fever (consistent with the MBVax protocol documentation).
As before, the side effects experienced during the fever were
chills (kept to a minimum using heat pads & blankets)
achy feeling in hips downwards (intensity 2 out of 10)
minor one-sided headache (2 out of 10)
dry cough especially when lying on the side
All the above side effects disappeared after the fever subsided. We also observed something interesting (but not surprising). During the chill phase, if she turned on her side, the shoulder not in contact with the heating pad would start to feel the chills. This would be immediately mitigated by lying on her back against the heating pad.
Again, this fever seemed to be lesser in intensity and duration. By 5 hours after start of infusion, she was all ready to head down for dinner (she never gets to eat lunch during the days when she gets Coleys, mainly to avoid nausea during the fever). She even felt strong enough to take a shower before heading down to the cafeteria for dinner.
Next week, we are considering increasing the dose to 0.002ml. We feel that the increase from 0.0005 -> 0.00075 didn't do all that much, and hence, a further increase to 0.001 may not be all that meaningful.
===== The wife reports on how it feels =======
Coley's Toxins Weeks 1 & 2
Submitted by CancerWife on Sun, 08/22/2010 - 22:37
We had heard and read much about Coley's Toxins and its potential side effects, and now I was to experience it. We want to share my experience with others: how Coley's Toxins actually makes one feel - both immediately during and after treatment. The past two weeks have been like a long experiment. We recorded every sensation I felt during and after the Coley's treatment. Constant temperature, oxygen, pulse and blood pressure measurements gave us more clues on how to ameliorate the side effects.
I am following MBVax's protocol (www.mbvax.com), which calls for intravenous administration and dose escalation to achieve fevers between 102.5-106F. The frequency of administration is five times for the first 6 weeks, then three times a week for 3 weeks, then two times a week for 6 months or more. I am aiming to do Coley's for a total of six months for maximum effectiveness.
During the first two weeks of Coley's Toxins treatment, I have been receiving intravenous infusions on Mon, Wed and Fri.
(unusable pixelated picture of a a [sic ]vial of Coley's Toxins (not MBVAX vial!) - red because of the Serratia marcescens bacteria)
Prewarming
One of the common side effects of Coley's Toxins is chills and shakes. A way to minimize the shakes and chills is to prewarm the patient before the infusion of Coley's Toxins. This raises the body temperature so the body does not need to shake and generate chills to warm the body up as it responds to the Coley's.
Every time before the administration of Coley's, I lie in bed with blankets over me, and a full-body heat pad underneath. I only turn on the heat pad if I don't feel warm enough. After a few times of Coley's, we realized that it is best *not* to sweat before I reach a temperature above 102.5F. Somehow the sweat drains energy from me, making it difficult for me to hit the high temperatures.
Chills
Of the six times that I've had Coley's so far, I have not experienced any shakes. This may be because I am prewarmed, so the body does not need to shake to raise the temperature. I have felt chills though. It feels like a cool breeze along my back. Sometimes it is on one side of my back, going from the top to bottom, or sometimes it goes from left to right, and sometimes it radiates from the center of the back outwards.
Once I feel a chill, I immediately turn on the full-body heat pad. The warmth minimizes the chills. I usually feel 5-10 chills before it stops.
Sometimes during the chills, my bones feel achy.
Fever
Once the chills stop, my temperature starts to climb. During this time, I feel hot and fatigued. Usually the volume of my voice decreases, and I feel like keeping my eyes closed. I try to stay warm but not to a point where I am sweating.
I also keep on sipping electrolytes. MBVax recommends making your own electrolytes with sugar, salt and water, as the store bought ones have too much sugar. The amount of electrolyte I need seems to correlate with how much I've sweat.
I have felt headaches during the fever phase. Usually it's only on one side of the head - a dull headache. It usually goes away by the end of the fever and after I take more oral electrolytes.
Flush phase
It's been quite consistent that when I feel I cannot take the heat anymore and throw away the blankets, that is usually when my temperature starts to decrease. I also feel much warmer and start to sweat more.
After the fever
When my temperature drops to 100-101, I usually feel well enough to eat dinner with a good appetite (see picture below - my dinner after the fever). I don't eat during the fever, so I skip lunch. I am usually a bit fatigued, and my bones feel achy and tired.
The next day I usually feel 100% back to normal. A few times I felt flushed and hot, but that only lasted about 10 mins or so.
An interesting thing is that if I get Coley's on Friday, I feel totally fine on Saturday, but I start to feel a bit fatigued and my bones ache a bit on Sunday.
===== END wife report =======
== DOSE 0.002ml ==
Coley's Toxins IV #7 - A long but sub-optimal fever DOSE 0.002ml
Submitted by CancerHusband on Mon, 08/23/2010 - 22:24
Today's fever was uneventful but interesting. We went with an increased dose of 0.002ml thinking that an increase from 0.00075ml to 0.001ml wouldn't do much. We were right.
The chills began 1 hour after infusion start like clockwork. However, 3 hours after infusion start, her temperature was still 101.2F. It became apparent that today's was not going to a very high fever.
The fever stayed mostly between 101 and 102F for a good 3 hours. It briefly touched 102.5F but only for a few minutes.
In general, she was pretty fatigued for the duration of the fever. All other symptoms were consistent with previous fevers - bone pain in the hips, tingling in the fingers, very slight chills (with heating pad), one sided headache, elevated pulse. These were all minor and they all resolved quickly as the fever subsided. However, the fatigue seemed to linger a little longer than usual.
The lingering fatigue might be explained by her anemia. Her Hemoglobin, MCV and MCH were low even before we started on Coley's. The MBVax protocol explains that Coley's may cause anemia itself due to competition in the bone marrow for increased white cell production. Furthermore, it seems that fever itself can lead to a drop in iron levels. Well, today, we got the results of her CBC and Serum Iron test done last Saturday.
Her iron levels are 33 ug/dL (normal being 50-180).
Hemoglobin has improved a little to 10.8 (from 10.1)
MCV declined slightly from 73 -> 72
MCH declined slightly from 24 -> 23.9
RDW is high at 18.7
It looks as like this is likely iron deficiency anemia. However, the Issels program does not recommend iron supplementation (iron through food is OK). Nevertheless, we have ordered Floradix iron supplements from the US via mail and hope that it'll make it to the hospital in a couple of days. Strictly speaking, we're not on the Issels treatment plan, but rather, we're following the MBVax protocol. And that protocol does call for Iron supplementation.
I also wonder if this anemia would compromise her body's capability to achieve higher fevers. Regardless, we will try to fix this and hope it'll resolve soon.
On a separate positive note, her total WBC is still at 7500/mm3 (if you remember, it doubled from 4000 to 8000 after the first 3 fevers. It has never been this high, ever, since chemo). In addition, a new development is her lymphocyte count is now at 2000/mm3. This is a first ever since chemo. Her highest has been around 1000/mm3 for the past 2 years since radiation and chemo.
Well, it looks like we'll have to increase dosage again the next time.
== DOSE 0.002ml ==
Coley's Toxins IV #8 - Another sub-optimal fever at 0.002mL
Submitted by CancerHusband on Wed, 08/25/2010 - 23:00
After some deliberation, we decided not to increase the dose level. Instead, we wanted to see if a higher fever could be obtained by increasing external heat instead. After all, we felt that the previous fever (#7) was quite a good one, despite the sub-optimal temperature. It's duration was long and she was quite fatigued after that fever.
Well, as it turns out, increasing the external heat did not lead to a higher fever. Instead, she again developed a fever mainly between 100-101F. This was noticeably lower and of shorter duration than the previous one. She also tolerated it easier and was less fatigued. She did experience some chills but very light ones and very short. She had bone aches from the hip down to the legs.
Our conclusion: increasing external heat did not seem to substantially affect her ability to achieve higher fever. It's clear that we need to escalate dosage.
== DOSE 0.003ml ==
Coley's Toxins IV #9 - A better fever but could be higher. A lingering (but very infrequent) cough.
Submitted by CancerHusband on Sat, 08/28/2010 - 16:37
Today we increased dosage again to 0.003ml. The fever was uneventful and predictable. It was somewhat better than the last one. However, it wasn't as high as we'd hoped for. The peak was a tad below the desired 102.5F threshold. So we'll need to increase again next Monday.
Well, so far, it looks like her Coley fevers are becoming quite predictable and boring -- and that's the way we like it. It'll be interesting though to see if we're able to reach the higher temperatures - and to see how how she tolerates them.
Again, the side effects have been quite minimal. The fatigue, increased heart rate, bone aches that occur during the fever all disappear as the fever subsides. And they are very minor to start with.
The only side effect that seems to somewhat linger on after fevers are gone are a slight cough. It's very infrequent -- we're talking maybe 20 coughs over the entire day.
The doctors think this could be due to general inflammation that Coley's induces. The worse case scenario would be the cough is caused by potential lung tumor(s). Our last scan on June 7th showed two tiny 2mm and 3mm nodules that are suspicious. They were too small to biopsy. Sarcomas can grow very fast. Thus, there's always the possibility that if those were tumors, they may have grown large enough to be symptomatic.
Even so, the cough may not be a bad thing. It could signify the vaccine having positive effect on potential tumors. There's a clear correlation between the frequency & intensity of coughs and the fevers. Coughing is more frequent during fevers - and more so during the fever peak. Regardless, let's hope the cough is due to something else.
===== The wife reports on how it feels =======
Coley's Toxins Week 3
Submitted by CancerWife on Sun, 08/29/2010 - 10:02
This week I had two increases in dosage - to 0.002mL and 0.003mL. Neither dosages gave me sustained fever above 102.5F. Most likely I'm developing some tolerance, so there will be more dose escalation next week.
We learned this week that if I don't sweat much during the fever, I feel more fatigued after the fever ends. This happened on Coley's #7 - I had to rest my head on the dining table during dinner time that night! Thus, for Coley's #8 and #9, we cranked up the heat pad when my fever started to subside. This caused me to sweat more and I had more energy after the fever ended.
Another thing we noticed is my hands have gotten darker. (No, I have not been tanning here in Tijuana :-)) The only other time this happened was during chemotherapy, when I received doxorubicin and ifosfamide. It is a normal side effect of the chemo. It could be that somehow Coley's is causing side effects from chemo to reoccur. Reactivation of "old injuries" has been observed in other patients receiving Coley's.
===== END wife report =======
== DOSE 0.004ml ==
Coley's Toxins IV #10 - Still not good enough
Submitted by CancerHusband on Mon, 08/30/2010 - 20:43
Today's dosage was again an increase to 0.004ml. This was because last Friday's fever wasn't very high and maxed out at 102.4F for a short duration.
Today's was even lower. It maxed out at 101.9F and for not very long either. I would estimate that the average fever was about 101F. It wasn't very difficult to tolerate and recovery as the fever subsided was very quick.
So it seems clear that her body is developing resistance to the toxins. Let's hope that dose escalation will be able to break this. We will ask the doctors if it would be appropriate to skip the next dose level and go straight to 0.006ml.
== DOSE 0.006ml ==
Coley's Toxins IV #11 - Breaking tolerance
Submitted by CancerHusband on Tue, 08/31/2010 - 21:53
Today, we increased the dosage from 0.004ml -> 0.006ml. We did this because it was becoming apparent that her body is developing tolerance to Coley's Toxins. We felt that increasing to 0.005 wouldn't do too much based on previous fever curves.
Increasing to 0.006ml was probably the right choice. We clearly noticed that today's chills were much more apparent (even with the heat pad). This was more in line with the robust fever from IV#2. Also, the chills occurred about 45min-1 hour after infusion start. This was followed by rise in body temperature shortly after. In contrast, fevers 8, 9 and 10 were slow to happen.
Today's peak was 102.7F. This is above the 102.5F threshold. We were happy about that. However, one interesting thing we noticed is that it dropped off rather quickly (in comparison to robust fever #2).
I wonder what it'll take to re-create a sustained fever. Do we merely need to hit a high enough dose? Or could it be that her body has become more efficient at neutralizing the Toxins? Hmm...
== DOSE 0.009ml ==
Coley's Toxins IV #12 - 104 Fahrenheit
Submitted by CancerHusband on Thu, 09/02/2010 - 17:38
Today, we decided to be a little daring and upped the dosage from 0.006ml -> 0.009ml (a factor of 50%). We decided to do this based on her response from fever #11 where we increased from 0.004->0.006ml. That 50% increase resulted in a clearly better fever, but still not quite high enough.
We got the go ahead from the doctors here. The fever was a little slow to start. Normally, the stronger fevers seemed to manifest chills 1 hour after infusion start. This one was later at almost 2 hours.
The historical records really are true - that robust fevers are clearly associated with more intense chills. Today's chills didn't last that long -- only about 30 minutes. However, it was clear that they were more intense compared to previous ones. Similarly, fever#2 resulted in intense chills as well. Today's chills were continuous and occurred in many places - in her shoulders, arms, legs -- and a new location -- behind her head! I suppose the pillow under her head prevented the heating pad from warming up that area. Nonetheless, it was interesting to that this is the first time chills have occurred there.
Once the chills subsided, her temperature began to rapidly rise. It reached 103.4F about 15 minutes after the chills subsided. Shortly thereafter, it peaked at 104F. This is the first time it's hit that high.
Interestingly, her fever didn't sustain at high levels for long. As in fever#11, it began to drop quite soon after peaking. Nevertheless, it was still a good, robust fever, reaching the highest peak ever.
Other observations:
The past 2 fevers have not resulted in much aching in her long bones and hips. This occurred quite noticeably in earlier fevers. If those aches were indicative of bone marrow growth, it would be interesting to see how her WBC counts this Saturday are.
As before, she began coughing 30 mins after infusion of Coley's started. This time, the coughing was more frequent. Not more intense, just more frequent. Her temperature was normal at that time, but her face looked a little flush/red. Later on, during the post-chills phase when her temperature began to rise, I noticed that her cough also became quite frequent. Subsequently, it diminished as her fever decreased.
Note:
We just spoke with another patient here at the Issels ward. She received Coley's subcutaneously into her arm. She developed a fever of 104F (40C) for 5 hours! Boy, was that a major fever! After the fever broke, she had profuse sweating. The interesting point is that other Issels patients have also reported very long lasting fevers, 8 hours or more in some cases, that had to be stopped with Tylenol. That may be an advantage of subcutaneous administration (the downside being pain at injection site along with possibly unreliable development of fevers due to variable amount of Toxins entering the bloodstream?).
== DOSE 0.009ml ==
Coley's Toxins IV #13 - Revamped fever charts. Figuring out the dry cough.
Submitted by CancerHusband on Sat, 09/04/2010 - 16:31
I've programmed a chart that's hopefully easier for folks to see how the Coley's Toxins fevers progress over time. I did it mainly for ourselves to be able to visualize how a given fever compares with the prior one - and also how it compares with the "best" fever thus far. The best one she's had is fever #2. It was long and protracted, and she stayed well above 102.5F for a good 2.5 hours.
Now, back to today's fever. Since the prior fever was a good one that reached 104F, we chose to stay at the same dose level. That's what the MBVax protocol calls for.
Chills
The chills took a while to develop - but they did come eventually. The chills were frequent but very gentle this time. Mainly a light cool sensation on the back, arms, back of head. Remember now - she has a full body far-infrared heating pad along with blankets and a second chest heating pad. These are turned on and put in place right from the start, before the chills. Again, the purpose is to ward off violent chills and shakes which happen when the body resets it desired temperature point upwards and tries to generate internal heat.
The gentle chills foretold of a lesser fever. Still, she managed to hit 103.1F (39.5C). In all, I estimate that she stayed above 102.2F (39C) for a good 1.5 hours. The plot of this fever (#13) versus the prior one shows a more or less similar curve, except with a lower peak. This indicates her body is beginning to develop tolerance to this dose level (hence the lower peak). We will need to think about whether to increase dosage for next Monday.
Figuring out the cough
For today's infusion, we worked with the doctor here at Issels and decided to eliminate their pre-infusion vitamins and minerals (all prior Coley's infusions were preceded by an IV infusion of B vitamins and minerals to strengthen the body. This was mixed into 500ml saline). For today, all that was given was 250ml of pure saline. The reason we did this was to see if the pre-infusion was contributing to the dry cough that happens each time she gets Coleys.
The doctor also listened carefully to her lungs before infusion, and during the fever, when the cough started up. Here's what we found:
Her lungs sounded very clear before infusion (when there was no cough)
During this fever, the cough was noticeably less than the prior fever (#12). Three differences in today's fever are
Smaller volume of infused liquid (250ml versus 500ml)
No B vitamins + multi-minerals
No Coley's dose increase (hence a less intense reaction than #12)
During the fever cough, the doc listened again very carefully and noted the following:
When breathing normally, her lungs sound clear -- i.e. no evidence of general bronchial constriction that may be indicative of allergic reaction due to Coleys.
However, when coughing, it does sound like a "wheeze" (only during the cough).
The doc suggests one possibility is a small tumor that might be pressing on a nerve. Coley's causes tumors to inflame. This might be an explanation for why the cough comes during infusions. The doc didn't think it was a pleural cough. The doc said that a pleural cough would be triggered when one breathes in deeply -- and would manifest in a sharp spasm/pain in the sides. (In her case, she does cough whenever she breathes in deeply, but there are no sharp pains).
Is the dry cough due to general inflammation?
Another possibility that we're pondering is general inflammation caused by Coley's. We've been observing minor but noticeable aches and pains here and there - like on a finger tip, behind the knee cap, in the hip. These generally occur during the peak of the fever.
We can't help but to make an association with an episode 2 years ago when she was given a single shot of Depot Lupron before chemotherapy. This led to all sorts of pains and aches on her chest, ribs, jaw, scalp, shoulder... and it also caused a dry cough. All our doctors and oncologists were totally stumped. CT scan, X-ray, nuclear perfusion tests, blood tests were negative. The ER doc suggested that her cough could be caused by inflammation in the pleura surrounding the lungs. In the end, we did a little experiment, based on the hunch that what we were seeing was generalized systemic inflammation. So she took a single dose of ibuprofen, and that IMMEDIATELY killed the cough and aches and pains. It was like magic - really. Coleys almost definitely causes temporary inflammation. So, you can see why we might believe that the dry cough, aches and pains that we're seeing are due to a generalized inflammatory process.
===== The wife reports on how it feels =======
Post-fever appetite: Coley's #13
Submitted by CancerWife on Sat, 09/04/2010 - 21:32
During my Coley's treatments, I eat breakfast around 8:30am, skip lunch, then I eat dinner after the fever subsides. Today I decided to eat some fruit during the fever, as I was getting quite hungry. I had a plum, then a banana. That wasn't quite enough for me, so after the fever came down, I went down to the cafeteria and asked for a snack. I had two pieces of cake (healthy cake with nuts and fruit) and a cup of apple juice.
Then came dinner time. We went out to a nearby restaurant with other patients. I had a bowl of tortilla soup (with avocado, homemade cheese, tortilla strips) and ostrich steak. The ostrich tastes like very lean beef. I've been low in iron, so I've ordered ostrich a few times already. I had room even after that! So, I ended the meal with a large piece of carrot cake. After all that eating, I wasn't even stuffed!
I'm in awe that I have very good appetite each time after Coley's. It's such a stark contrast to the time when I had chemo (doxorubicin and ifosfamide). My appetite got worse and worse with each round of chemo, and my weight kept on dropping. With Coley's, I have no problems eating dinner afterwards, and as you can see for today, I can eat quite a large meal!
===== END wife report =======
== DOSE 0.009ml (+) ==
Coley's Toxins IV #14 - Another good fever.
Submitted by CancerHusband on Mon, 09/06/2010 - 20:08
Today's fever was another good one. She stayed above 102.2F for a good 2 hours.
The fever curve was quite similar to fever #2. The maximum temperature was 103.6F (39.8C). However, you'll notice that it took a little longer to reach its peak. However, once reached, it seemed to stay up there a little longer than recent fevers.
Observations for today's fever:
Chills lasted for about 20 minutes but were very mild
The dry cough was even less than fever #13. It occurred only when she would lay on her side. And even so, they were sparse. Could it be that it's resolving??
She had some numbness and sensitivity in her left hand today -- more so than previous fevers.
She had a dull headache (mainly center front) and also a transient sharp pain in the back of her head (left side). These are were quite minor (in terms of intensity).
Other than that, I would classify today's a robust fever, with weak chills. Lasted on the longer side at relatively high temperatures.
OK to eat during fever?
The MBVax protocol warns not to eat before Coley's, as well as during the chill phase. I need to check again, but my impression was not to eat during fever as well. It would make sense too, since digestion would probably be impaired during fever.
Well, today we decided to experiment a bit. Whenever she gets Coley's, she doesn't get to eat lunch. And today's Coley's started dripping at around 12:45pm. So, by 4:00pm, she was pretty hungry. Thus, even though she had just reached a high temperature of 103.6F (today's peak), I decided to let her eat a little fruit. We went slow and she had no problems. No nausea. Eventually, she probably ate a full cup of fruit (grapes, canteloupe, papaya). Later on, I gave her a cookie to eat as well.
Interesting observation regarding dilution
Coley's Toxins has to be diluted before being administered intravenously. Today, the Coley's Toxins vial was almost empty. It probably had 0.2ml left, of which 0.1ml was removed, and then diluted. We noticed that it seems a little darker red (more concentrated). This could happen if the vial is not shaken thoroughly each time before extraction. This would result in the remnant solution becoming more and more concentrated. Therefore, even though we kept at 0.009ml, we probably got more than that today.
Possible reactivation of old injuries by Coley's Toxins
We've heard from MBVax that they've observed Coley's reactivating "old injuries". Secondly, the doctors here at Issels believe that Coley's mobilizes toxins and possibly any remnant chemo from the body. They believe it is very important to have a good sweat during/after Coley's (in order to get rid of these toxins).
Well today, we observed something reminiscent of a side effect from chemo 2 years ago. Chemo caused callouses to develop on her fingers, and also some skin peeling. Today, before Coley's started, she observed some of that on her left thumb. She doesn't think it's due to soap because it's only on the left thumb and not on any of the other fingers. A few hours after the fever, she observed little bumps on the thumb. These are all pretty minor, but still noteworthy.
Postponed until tomorrow
Submitted by CancerHusband on Wed, 09/08/2010 - 18:21
Early this morning, she woke up with a slight burning sensation across the upper middle area of her chest. Later on, she felt a slight heavyness in her chest. It would eventually get better by evening time.
The doctors listened carefully to her lungs. They said her lungs sounded clear.
One possibility is she might be fighting off an upper respiratory infection. It's been going around here in the small ward where we are. There are no open windows here so it's hard to get real fresh air.
Our standard protocol when we see the first signs of an upper respiratory infection -- and which has worked very well for us the past 2 years -- is to immediately supplement with the following for no more than 3 days:
High dose Vitamin D3 - 90,000IU / day for 3 days max
Sambucol (Black Elderberry extract) - 2-3 Tbsp / day (better than Tamiflu)
Lactoferrin (between 500mg - 1000mg, twice daily)
Generally, we try to minimize supplements during Coley's. One can do as much research as possible and choose supplements that may be complementary to Coley's. However, there's always a risk of negative interaction. For example, taking high dose fish oil is anti-inflammatory and there is the risk of muting the immune response (which we don't want with Coley's!!). Likewise, there is the theoretical risk for Vitamin D3, Curcumin, and maybe even EGCG. These are all based on our own research trolling through pubmed research articles. Therefore, we intend to take the above supplements only for 3 days maximum.
We'll see how she fares tomorrow. We agree with the doctors that it makes sense to postpone Coley's and re-evaluate come tomorrow.
== DOSE 0.012ml ==
Coley's Toxins IV #15 - A good fever given the circumstances
Submitted by CancerHusband on Thu, 09/09/2010 - 21:25
This morning, she woke up and felt good enough to to Coley's. There wasn't any "slight burning sensation" in the chest. Neither was there any noticeable heavyness. However, she did have some light yellow phlegm that had to be cleared with some difficulty. So we're thinking that the symptoms she felt yesterday were the beginnings of an upper respiratory infection after all. Perhaps our standard high dose Vitamin D3 - Sambucol - Lactoferrin mix nipped it in the bud, as it has done so reliably for the past 2 years. Only time will tell.
As usual, she received an infusion of saline + B vitamins + multi-minerals. She's received this with almost every Coley fever. This is standard operating procedure at Issels. The actual Coley's was infused beginning at 1pm. It's now 7pm and she's finally gotten up and gone to wash up.
Mild chills
She experienced fleeting chills 1 hour post infusion start. Then, nothing for a while until about 2.5 hours post infusion start. The second occurrence of chills ended up being only about 15 minutes. As usual, they were mild, which we assume is due to our pre-warming with the far infra red pad.
Even milder cough
If you remember, the last Coley's was characterized by a rather mild cough. We were wondering/hoping then that her fever associated cough was beginning to resolve. Well, today's cough was even milder. When coughed only a few times the entire day. There were no spontaneous coughs. They had to be triggered with deep breathing. This happened only after the fever peaked.
Fever strength and duration
The fever peak wasn't very high. But we're not too surprised. We did increase dosage to 0.012ml. We did so because we feel that the previous dosage of 0.009ml was in actuality higher due to the more concentrated remnant fluid left at the bottom of the vial. So, we wanted to stay at the "same dosage" as before. And we took a best guess and estimated it to be 0.012ml, not daring to go higher.
Today's fever peaked at 102.7F. It hovered above the lower threshold of 102.5F for just about an hour and 20 minutes. So, while it wasn't a very high fever, it was a relatively protracted one.
Overall, we were both quite pleased with today's fever given that she was a bit under the weather to start with. An interesting observation:- after the fever, she observed that her lungs felt clearer -- perhaps the fever helped smack down any upper respiratory tract infection! ..... we'll see.....
Back home for the weekend. A four day break.
Submitted by CancerHusband on Sun, 09/12/2010 - 11:32
We're back home for the weekend. She just had a routine Chest CT done and we're waiting for the film lab to burn the disk. As a result of our little haitus, it'll be 4 days break in between Coley's Toxins treatments (we'll resume Coley's next Tuesday).
The MBVax protocol talks about loss of tolerance to Coley's Toxins. Patients who stop Coley's for more than a week are supposed to go back to the beginning and start at 0.001ml all over. Ours will be 4 days - not quite 1 week. We might consider reducing dosage. We'll have to discuss this with the Issels doctors.
Well one thing's for sure, we're enjoying the food back home and eating as much as we can! (The food at Oasis is really quite good, but it's primarily vegetarian)
An unexpected delay in treatment
Submitted by CancerHusband on Tue, 09/14/2010 - 18:56
Sunday night, she suddenly came down with spontaneous shaking chills and high fevers - three of them in the ensuing 24 hours. Her highest registered temperature was 105.6.
After the first fever subsided, we thought it was most likely some viral infection that was resolving. However, when the second one hit, we cancelled the flight back down to San Diego (no way she could walk with the severe chills). We waited for the chills to subside and the fever to spike.
The second fever seemed to resolve after some time. I wanted to take her to the urgent care clinic but she wanted to have a meal. After the meal, the chills hit yet again, and her temperature spiked again.
We took her to the Stanford University ER where they did blood cultures, X-rays, urine samples. They administered broad spectrum IV antibiotics empirically, as there was no obvious infection (no flu like symptoms, no burning during urination, no diarrhea etc).
For many hours the ER doctors had no clear idea what could be causing the fevers. I had to explain to about 6 different physicians our adventures for the past 5 weeks in Mexico.
After about 14 hours, they found evidence of bacterial contamination in her PICC line. They removed the line and sent it for further analysis, hoping to isolate the primary bacterial strain. By that time, she was already beginning to feel much better.
It may take a few days (or more) to take care of this infection. This will cause a delay in her treatment. We won't be going back down to Mexico until this is completely taken care of. Sorry.... but there'll be no Coley's fever graphs until then ....
Delay in Coley's while waiting for Graves' to subside
Submitted by CancerHusband on Sat, 11/27/2010 - 14:23
We're still waiting to resume Coley's. Unfortunately, there's been a resurgence of her Graves' disease (which started in April 2010). One of the symptoms that we have to be careful about is the elevated heart rate due to Graves'. We're trying to get that under control before considering resuming Coley's.
There's the possibility that Coley's caused her Graves' disease to re-surge. However, there are other potential causes including the Pseudomonas sepsis itself, or a recent bad allergic reaction triggered by her PICC dressing.
Our best guess is that she may have had Graves since 2008 (or at least some tendency towards autoimmunity). Why do we think this? Mainly because she experienced a major unexplained bout of systemic inflammation from a single dose of Lupron in 2008, and then half-side body numbness after a single Pneumovax shot in mid 2009. These occurrences were unexplainable and self-limiting. A neurologist-oncologist we consulted with at Stanford concurred with us that the Pneumovax reaction was most likely an autoimmune attack on the nervous system.
There are also historical references to Coley's being used to ameliorate autoimmune diseases such as rheumatoid arthritis. Obviously, we hope that Coley's was not the cause of the Graves' resurgence. Regardless, we will have to proceed carefully in the future to ensure that it does not exacerbate Graves' too much.
END
