This uterine cancer e-patient had a very bad reaction to a new chemo regimen yesterday and has lost confidence, and wants to learn more before proceeding. What advice do you have on these treatments? Are there good online e-patient communities?
The emails I received:
I went to the Infusion Room and a young RN starting infusing me with preparatory drugs such as Benadryl and steroids before the Taxol and later Carboplatin.
The moment the Taxol starting flowing into my system I had a series of “Oh no!” reactions that indicated a severe hypersensitivity to the drug. A crowd of nurses came on the scene.
My blood pressure dropped, I was seeing stars for hours afterwards, I couldn’t breath for the longest time. I am allergic to the stuff. They tell me it didn’t amount to full blown anaphylaxis, or cardiac arrest – but boy was it scary. I was sent home as my doctor determined I could not be “challenged” by it again until I was seen by an allergist.
I have since learned that most people who react (and there are lots of them, as much as 20%) are sensitive to the solvent which extracts the medicine from the yew bark to make the drug.
It’s a cheap enough FDA-approved drug, “well-tolerated” by most. But there is another (Abraxane) where the solvent is something different – albumin – and fewer people need the work-up of antihistamine and steroid (see they already know the potential lethality of Taxol!). However since fewer people buy it, it is very expensive — like $4200 a dose versus about $150. This is not a problem for me, and under the circumstances, even my insurance company might be persuaded. It turns out that Abraxane is approved for recurrent disease, not the initial case.
However in the interest of frugality, they want me to work with the stuff and become desensitized. From what I have learned, the desensitizing has to precede each chemo session. The other drug in the chemo regimen is Carboplatin, and there are people who are sensitive to that as well. They never got that far with me today.
My son was sitting directly across from me during the incident and he told me my face turned bright red and I looked like I was jumping out of my chair. I forgot but he noticed a nurse had to restrain me. I was close to blacking out.
After about 2 1/2 hours of no Taxol, all symptoms had vanished (seeing stars was last to go). But I saw how you could die from this, as some have done. If your heart is weak – or you are farther along in chemotherapy that it might have sustained some damage — well I don’t think the desensitization will cut it.
Time to be a very enquiring patient, and to confront the ideas behind this. I am not an average. I am an individual. And clearly my personal system does not accept this common enough drug. Too bad for the long-term use of it. Time to strike out in another direction, I think.
Email 2
Today they are pushing me to go for a desensitization session, pronto. I got a call from the allergist, and another one from my oncologist’s nurse, urging me to stick with the program.
Yesterday, when I was being prepped for the infusion parlor, I had a meeting with my doctor to sign consent forms. He did tell me that some minuscule percentage of patients reacted to the solvent. I also saw that on the consent form one of the possible outcomes of using this chemotherapeutic agent was death. But I signed and went ahead.
I knew that one of my friends who had it had a similar reaction. That’s two of us now. So I hit the literature. I found that one of the patients who died had been reassured beforehand that the prepping with Benadryl and a steroid were adequate. He died of cardiac arrest (with perhaps pre-existing heart disease).
Well, it turns out that steroid actually needs several hours before it can have an effect, and it is only given shortly before the infusion as part of the i.v. line. Why?
They questioned outpatient compliance for actually taking the steroid before showing up. But it was as used sheer window-dressing. The article is very critical of this procedure. I also read about Abraxane, and wrote a note today to my oncologist to look into it.
His nurse (who always reads his email) when she called me denied that this was used in uterine cancer. I told her that it was exactly the same as Taxol, just in a different solution. She held her ground, but I have yet to talk to my oncologist.
If you have a severe enough reaction, they are not supposed to rechallenge you at all. So yes, I think calling my insurer might be in order. After all, I will be better off alive. Yes, you may anonymize this to solicit comments.
I have a lot of sensitivities to many things. I tend to be very very hard to wake up after anaethetics. I have celiac disease. Lots and lots of hassles, and each shock to the system make them worse. After the lat episode I had malabsorption and have to have my medication hand-made specially with pure medicine and organic corntarch and nothing else, by a compounding pharmacist (expensive).
Last summer I had repiratory failure. As usual I repeated my long list of sensitivities. As usual I was treated as if I was fantasizing. Thinking my respiratory failure might be a horrible auto-immune diseae, the doctor ordered plasma treatments. I went into full anaphylactic shock. The student who was supervising me called a Code Blue and ten doctors piled into a treatment rom the size of a bathroom. As soon as they stopped the plasma, I came back out of it. I started laughing and someone asked why; I said “NOW you’re going to believe me”. The next day they gave me the plama specially cleaned of additives (I don’t know how) and no reaction.
They also gave me very high dose prednisone,by IV, and they cleaned that of additives too. I don’t know how but if you want to contact me on Facebook I can ask.
If you have the kind of enitivities that I do, de-sensitization does NOT work. Quite the reverse, every shock sets off the immune sytem’s alarm bell and I react wore until I react to a few molecules.
Talk to your doctor about this in detail. Stand your ground. Explain clearly that going into near anaphylactic shock i not going to improve your health. If the other medication is approved for re-emergent cancer, it will take only a minor tweak to get it approved in a special case.
I had a very serious allergic reaction to carboplatin while having my 12th carbo taxol treatment . I was being treated for a recurrence of Ovarian cancer. I was transferred to the hospital and had additional tests including heart catheterization. My gyn onc would not even try sensitization due to the severity of my reaction.
Which cycle were you in when this reaction occurred? Was this for a recurrence? What other treatments have you had?
I would request time to talk with your oncologist /gyn Onc. Face to face better than a phone call but speak directly to him / her.
Why are they unwilling to switch to abraxane ? Of the women I know whose treatment started with taxol they would switch to abraxane if neuropathy is an issue or they have a reaction. If you are treated at a smaller community infusion center it may be a cost factor . I have not heard of issues with insurance when allergic reaction is a problem. Insist that they give abraxane a try.
I am surprised you were not given steroids to take the night before.I even took a steroid the day after my infusion. If they explain the reason for taking the drug ( reduce reaction) they would help insure you as well as other patients will comply ( comply is not my favorite word) .
If you can’t use taxol what other drugs / treatments does he/she recommend.
If you are on Twitter tweet a link to this article using the hashtag #gyncsm and ask your question. I am sure you will get good advice.
I have never had any chemotherapy. This was my first experience. The Paclitaxel started infusing and I got the reaction. I had been given an infusion of Benadryl beforehand, and I think a steroid was included. But I understand now that steroids must be administered hours before to have any effectiveness. So my first day of chemo, I basically washed out and was sent home.
I do not have recurrent disease as yet. This is the first time for me.
I understand the platinum based drugs create sensitivities after longer usage. I am up for six sessions of carboplatin, but my therapy did not get that far the other day. I never got a drop of it.
No, my current problem is to deal with either desensitizing to the current form of Paclitaxel or to get Abraxane as less likely to cause the problem in the first place (but it is more expensive and used in other types of cancer). I am in a big city hospital with a good reputation, and all the resources at its fingertips – but people still die anyway.
Thanks, Dee – I did tweet it a few hours ago – no responses yet. Fingers crossed.
From gyn oncologist DrMarkham on Twitter: “I often switch to Abraxane in this situation. Even in endometrial cancer.”
From @CancerJourney Rick Boulay MD on Twitter https://twitter.com/journeycancer/status/728676801514487808 – “The patient needs to consult her physician, in cases like this I generally recommend docetaxel.”
The National Comprehensive Cancer Network (NCCN) treatment guidelines (physician and patient versions) can be a good place to start learning information about a treatment plan and any suggested variations. https://www.nccn.org/professionals/physician_gls/f_guidelines.asp
For e-patient communities, it can be hard to find for the GYN cancers beyond ovarian and cervical (outside of the #gyncsm twitter community). The active nonprofit patient advocacy groups for uterine/endometrial cancer are Peach Outreach and The Iris Foundation. Keep being your own best advocate.
#gyncsm community member Christine Lazo (who commented above) adds on Twitter:
also note – here is the #gyncsm community resource page re: GYN cancers
http://gyncsm.blogspot.com/p/resources_9.html
(Link to that tweet for reference: https://twitter.com/btrfly12/status/728772005227421696)
One more thing to note. In cancer care, second opinions are often an important part of the process. Many benefits and relatively few down sides. If you are not feeling comfortable with what your team is recommending, getting a second opinion is a routine next step.
From Brenda via email:
Some people do have bad reactions to taxanes. It is actually the material in which the drug is suspended. If memory serves, if you take a different formulation, you may not have such a reaction. I think it’s called nab-paclitaxel, but I’m not certain.
Hi everyone. I did seek a second opinion, however the dominant opinion where I live is that patients can be desensitized to the effects of the solvent used in Paclitaxel, by a rigorous approach from allergists in which a dilute solution of the drug is gradually increased to full strength over twice the usual infusion time, with the patient pre-medicated with steroids and antihistamines. According to the protocol, the patient is kept in a hospital setting, close to the ICU with careful monitoring. A paper was produced about ten years ago at one of the Boston hospitals which showed that all patients could safely pass through this procedure, although some small percentage might be eventually put on another medication because of continuing reactions.
No one wants to use Abraxane without this process. As far as I have learned it is because Abraxane, though identical to Paclitaxel except for how it is suspended in the solution medium, has not been tested on endometrial cancer patients and has been tested for FDA purposes only on other types such as ovarian and breast cancer. Therefore, it is considered a kind of experimental drug which needs other types of approval.
It is discouraging to be made to acclimate to something noxious, but that is how the game is played, and I have to play that game if I want chemotherapy. The idea that few people ever react to Paclitaxel is not quite true. My friend, who is in remission from endometrial cancer, was told that when she reacted too, she was one of only 3% of patients. She does not read medical articles like I do (guess it is my law school training to absorb large amounts of unfamiliar material and try to make sense of it), but from what I have seen, if patients at the infusion center were not prepped with antihistamines (as I was – though it did not suffice), about 40% would have a reaction. I however learned from this same woman that her daughter, a veterinarian, told her the solvent used in Paclitaxel used to form a part of pet anaesthesias, and that it was discontinued when so many cats died from its use. I guess cat owners are a stronger lobby….
In passing, my wife (a veterinarian) notes that cat anesthesia is a whole different subject from humans.
I meant to say “No one wants to use Abraxane on a patient like me” – at least not in the hospital system I am in.
Today, with much skepticism, I underwent a desensitization process for Paclitaxel. It got off to almost as rocky a start as the initial attempt, which resulted in the anaphylactoid reaction that sent me looking for alternative.
At 1/100 strength, filled up with antihistamines, I had flushing, difficulty breathing (dyspnea), and other allergic symptoms, however less severe than my initial attack. They detached me from the I.V., the allergists at the hospital were consulted, and it was decided that the solution should be diluted and administered more slowly. This actually worked. At the end of the day, after my immune system was acclimated (fooled, you might say), I was receiving the full strength Paclitaxel, at a slower drip than in the outpatient setting, and no adverse reaction took place.
Unfortunately for me, this does not represent a permanent desensitization. Although no one is sure at which point during five more chemo sessions I can be in an outpatient setting, they are unanimous on the idea that I will always need to take more time to get the Paclitaxel infusion. The next session will be inpatient and proceed stepwise as the one I just had.
The other chemotherapeutic agent is Carboplatin (to which users become allergic after more sessions than are scheduled for me). I did fine with that one.
We left the hospital about midnight and I slept very peacefully at home.
The allergist after my first overreaction to the dilute solution actually mentioned Abraxane if all else failed.
I have to say that I am impressed with my care and with the results. I am also glad I didn’t panic at any point and was able to stay relatively cool about the situation. Perhaps it was due to the fact that my first adverse reaction had been so intense, and my second one was so easily resolved. With each successive increase in intensity, I did fine.
Those allergists are onto something. I also feel that the immune system is the royal road to curing cancer. The more knowledge we gather about it, the better we can control this diverse disease. Cancer itself fools the immune system to fly below the radar. It is interesting to see how the chemo can be used to fool the immune system too.
I’m glad you were able to get your treatment at the very reduced concentration. I hope the remaining treatments go well for you too.
Thank you Dee. I hope your own treatment is going well.
I feel as well as might be expected. Certainly chemotherapy side effects for me are less stressful than the post-operative phase had been. I realize that keeping well-hydrated is the key to energy levels, as well as small meals over the day. When I receive my next treatment, it will also necessitate an overnight hospital stay and the same desensitization. I am up for a total of five more sessions. I do not react (as yet) to carboplatin. The day after my treatment, I had a slight metallic taste in my mouth, but that faded.
After genetic testing of the primary endometrial tumor, there was nothing “actionable” in the genetic make-up that gave me an in with some non-chemo style therapy, so I slog on the well-beaten path and hope it is going to be enough, while still looking out for ways of tweaking it. Taking Metformin, for instance, to control blood sugar, is one thing to discuss with my oncologist.
In the wake of illness, you are sometimes so invested in the seeming promise of getting well, from that particular illness, that you may not perform due diligence over the various elements of the treatment. Sometime during the first session of my desensitizing chemotherapy, some nurses dropped in to extoll the benefits of keeping nausea at bay all costs, and taking anti nausea drugs prescribed (I have three of them) pretty much at will.
I began to look them up. It seems they bear a strong resemblance to anti-psychotic and anti-anxiety drugs with their own problems associated. I am also a Type 2 diabetic and I have noticed my blood sugar is high (not good if you want to starve cancer out). At no time was it suggested to me that some other methods might be used to quell nausea. Drugs like steroids (also used initially in the chemo process) can raise blood sugar. I am looking into this right now. I see that one of the anti anxiety drugs, Atavan (Lorazepam) can be addictive after a short time. Also, paradoxical reactions can happen. The obvious contender for dealing with nausea, medical marijuana, is fraught with controversy – mainly I think because the dosage cannot be easily controlled and commoditized. I tend not to be overly suspicious of Big Pharma, but when the rubber hits the road as here, and when the shame of possibly vomiting in public is held over one, perhaps one can better see the pressures of conformity at this moment.
My second desensitization with Paclitaxel went smoothly yesterday. That is two down and four to go. I am told that each will probably entail an overnight hospital stay or at any rate a well-supervised outpatient procedure lasting at least six hours. My hospital is like a 5-star hotel, with great views from your private room. The outpatient procedure takes place in a tall chair with a view of nothing, but it is shorter. Having insurance is great, but they always opt for the cheaper alternative.