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Chemotherapy symptoms, combined carboplatin/paclitaxel
Comments
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It is often difficult to isolate those symptoms - I am so glad that you were able to get answers and hope that you will be able to find a combination that is effective without causing a reaction. I experienced a much milder reaction (pain up the spine, slight heaviness in the chest) during my second treatment, and the medical team was very responsive and took even the “mild” reaction very seriously. I took two days of pre-treatment steroids and antihistamine, and a different type of antihistamine on treatment days. After each treatment, I found that the dose of the antihistamines that were meant to balance some of the effects of the high dose steroids (Dexamethasone) had a “sweet spot” in terms of dose - too high a dose actually interfered more with sleep and nausea, while the “regular” dose was most effective. I really hope your team can find a safe and effective alternative option for you.
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@dolphingirl - OMG! I didn't have any reaction to either carbo or taxol - but twice when I was getting my treatment a lady in the chemo suite reacted. I remember the doctor telling one lady that she might have a delayed reaction, what to look for and when it was necessary to get to the hospital. Some very scary drugs are being infused into our bodies and while the goal is to help us fight cancer there are side effects that aren't very pleasant, and in your case, dangerous. I hope you are feeling better and are able to continue treatment with a different drug.
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kastoyles said:@dolphingirl - OMG! I didn't have any reaction to either carbo or taxol - but twice when I was getting my treatment a lady in the chemo suite reacted. I remember the doctor telling one lady that she might have a delayed reaction, what to look for and when it was necessary to get to the hospital. Some very scary drugs are being infused into our bodies and while the goal is to help us fight cancer there are side effects that aren't very pleasant, and in your case, dangerous. I hope you are feeling better and are able to continue treatment with a different drug.Thank you so much for your comment. Not only did I have my serious reaction, my doctor wanted to try the drug again giving me a higher dose of anti-histamines. The immunologist who saw me in the ER continued to follow my case and said that it would not be safe to re-try the Taxol again. I continued on with only Carbo with no further ill effects.I totally understand that every drug has side effects and that people react differently to drugs, but I somehow get the feeling that I was a great big science project through my treatment. I'm now on a maintenance dose of Olapirab and I kept getting calls from the pharmacy team checking up on me for the 1st month. It was almost like they were expecting something terrible to go wrong. After the 1st month this stopped.0
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@dolphingirl What a harrowing experience you had to go through! Thank heavens you did a little research into the culprit and hopefully with that knowledge they can switch up your chemo to drugs that you can tolerate. I hope you're starting to see more improvement as time progresses:) Best wishes for your treatments going forward.1
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I was only diagnosed 1 ½ months ago and had my first attempt at chemotherapy only 2 days ago. They are still not sure if I have a high grade serous or a lower grade because apparently my symptoms don’t fit well in either group and the lab results are inconclusive as well. My treatment was to be the combination mentioned but and I was premedicated to reduce or eliminate allergic response. After about 10 ml my face was flushed and I had difficulty breathing. The drug was stopped and I received more Benadryl and other meds. They waited 15 minutes and after about 4 ml I had a full on either anaphylatoid or anaphylaxis response. It was terrifying. I thought the cancer isn’t going to kill me my inability to breathe is. I had a whole litany of symptoms such as immense urge to empty my bladder, abdominal cramps, bronchospasms etc. I started to shake and thought I was going to have a seizure. Doctors and helpers flooded the chemotherapy room and I was given epinephrine several times and who knows what else. There were six other patients receiving chemo treatments and it must have been frightening for them as well. I could hear everything clearly such as she has no pulse and thought I must have because I am still alive. I kept thinking don’t pass out or you might not survive. I ended up in an ICU trauma room with five IVs running. Ultimately I survived of course but I was so very very scared. I did go home against advice after about seven hours but now what? Is that it for chemo? No one has contacted me so I guess I will phone them. The uncertainty is very difficult but the rapid medical,response was reassuring. Has anyone else had a similar experience and been given a different chemo regimented?
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Oh @WestWind that must have been scary and terrifying. How are you doing with it all now? I have not had an experience like that. I did react when I was given it initially and had the face flush, nausea, etc and mine was stopped and given Benadryl etc and then rechallenged after a wait period. I can't imagine what you went through. It almost sounds like you were having an out of body experience as they were working on you. I am sure they will contact you but if you want to make the first contact, go ahead, there is no harm in that either.
As for the diagnosis, I was diagnosed with LGSC but also know that there are markers there for HGSC as well. How they determine what they treat and why, I never asked. Mine like yours are not clearly defined and is probably why the LGSC was the primary due to the lack of evidence that the HGSC was clearly there as well. Perhaps in your next meeting you can ask what they are trying to treat and why. But give yourself and your body time to heal from this latest insult it took because it was a doozy by the sounds of it,
I know the other ladies will weigh in as they see this post. If you want and can, join our Teal Thursday online chat at 1pm ET today. There may be some gals on there and you can pose some questions that they may be able to answer there. If you can make it, we would love to have you join. In the meantime, rest, recover and get some vitamins in you to boost your body back up. Some protein too if you can. Thank you for sharing what must have been a very scary moment for you and being vulnerable enough to share with us today about it. Hoping to see more posts from you in the near future as well.
Take care💕
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My oncologist has a new combo in mind for me but I am going to be very nervous at the start of every treatment. My allergic reaction was so quick and very scary.
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Yes, I imagine you will or would be @WestWind as that would be the natural response to what you endured. I can ensure you that they will tred with caution and be there with you as they administer whatever the new cocktail may be. If you are extra nervous, you can always ask if there is something they can give you to calm you down a bit. Might be worth the ask. I can't imagine what you experienced and to that level. It most definitely would have been scary and you may have even felt powerless as it was happening. I have my fingers crossed that at your next one, you will ask the questions you need to before anything begins and that it hopefully eases any anxiety you have about another treatment. On the flip side, if by chance, you either did not want to try again or if this did not work, do they have suggestions as to what they would use or advise next? Perhaps that is one of your question to ask. In the meantime, my heart goes out to you as that is a very scary and unwanted way to begin a treatment. Practice some meditation as it may help you when you go in to sit in the chair. Please keep us posted as to how you are doing and how the next treatment goes.
Take care of YOU!!💕
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Thanks for your suggestions. My mind was remarkably clear through out but somehow, even as I was afraid of suffocating, it seemed as if it was happening to,someone else. It was a very bizarre experience. Frightening for the six other chemo patients too but they should have been comforted by how rapid the response was.
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OMG @WestWind You are amazing! I don't arbitrarily throw that word around. I am not so sure what I would do in the same situation. It is remarkable how clear headed and calm you were despite what you were going through. Another reason to share your experience with others so that they know that even when faced with a reaction like yours, that the team is at the ready and fast to get you stabilized quickly. Suffocating…..I think it is on a top list for many of things they never want to experience. How scary at the time too for you and as you stated the other patients in the room. A learning experience to know how fast the team can respond for sure. Brave woman you are! 🤗
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@dolphingirl I had a reaction to the taxol the second treatment…It was scary but they controlled it every other time with the shots and the pre-meds. I got through. If I ever have to do it again, it will be stressful for sure. Regarding olaparib, they called me a lot at first too, I think that is the common protocol as the drug is still being assessed and they want to know if you are tolerating it. I'm pleased to say I'm a year on since finishing olapraib (Lynparza) and doing well. The stats are good on that!
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I'm on my 3rd year of the Lynparza as after the 2nd year the lymph nodes still showed some cancer. But I am doing well. Nothing has grown and no new cancer. Fingers crossed that it stays that way.
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My oncologist said they would not try that combo again even with extra premedication. They had infused about 10 ml and I became flushed and had difficulty breathing so they stopped and gave me more Benadryl and likely dexamethasone, waited 15 minutes and tried again. That is when I had a cascade of symptoms..a huge urge to urinate, abdominal cramps, severe nausea then great breathing difficulty. They called it anaphylactoid not anaphylactic but whatever it was so fast. I wondered if they might suggest increasing the premedication and try again which would be scary but the doctor said no but right now I have yet to receive any chemo and my tumour is very large and I have ascites and need nearly daily paracentesis. At times I feel very discouraged but try to just enjoy what I can each day. This site is very helpful for me and I appreciate reading about you all. Thanks for sharing.
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@RobinD @dolphingirl Sounds like you both are doing well. That is good to hear. Tolerated the Olaparib as well by the sounds of it with minimal side effects. Very positive news indeed!
@WestWind By the sounds of your reaction to the chemo, I would side with the Oncologist on this one. Interesting what a few letters can change in a word "anaphylactoid" vs "anaphylactic". I looked it up (because I am curious) and the difference is that Anaphylactoid-mimics anaphylaxis but does not caused by the IgE mediated immune responses. I can only imagine where your mind may wander given your presenting symptoms and it must be very difficult. How has the daily paracentesis been for you? I know other women have struggled with the paracentesis both physically and emotionally/mentally. I am glad this site has helped you on your own journey. Thank you for sharing your own journey with all of us. We are here for you as you continue on your journey and await what treatment protocol will be brought forth to you. 💕
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@Strongwoman..sorry I didn’t reply sooner but I forgot the name of this site. I am currently on PaxitaxilNAB/Carboplatin and I have two more or less trouble free chemo therapies though I do suffer from extreme vertigo and have neuropathy in my hands and feet. I need to use a walker. I agree it was anaphylactic as it doesn’t require previous exposure as does the anaphylactic action. I don’t think it is quite as severe and at the time I didn’t want to suffocate but I wasn’t particularly afraid. There wasn’t time for that. Afterwards I was frightened and for my first actual chemotherapy I had to wait 21/2 hours because my orders hadn’t been updated so that gave me a great deal of time to fret a little. The combination I am currently one only takes one hour to infuse instead of five so that is great. I asked the oncologist if it was less effective than the first and he said no just it hasn’t been researched as thoroughly as the more standard set.
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@WestWind That sounds more reassuring for you. Sounds like you are settled with the decision as well. Bonus is that it takes less time to be infused which is great.
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I am really glad that it takes less time as my son had to wait all that time for me to be finished so he could drive us the 45 minute drive home.
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That sounds like a much more doable time to wait for you compared to that longer day you had when the chemo was longer. Bless your son for being patient and waiting for you. They truly are amazing when they step up to help us, aren't they @WestWind
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@Strongwoman Both my sons have been amazing. My son who is a doctor is always willing to explain things that I have had questions about and just brought my three grandkids to visit me. They were great as I thought they might find it upsetting to see me with no hair and a catheter bag but they only things said or questioned were from my six year old grandson who said you still have a tiny bit of hair and how does that tube get inside you. That was it. My other son has been woken in the middle of the night to take we to ER. So both help a lot. I wanted to say to the patient from Ontario it appears that there are several different programs that cover drug costs but she might have tio become palliative care and have a palliative care doctor. Palliative care does not mean you are about to die shortly just that you are suffering from a condition that can prove to be fatal . Can be, not that it absolutely will be. Sorry I can’t remember your name but I hope you found a program that pays for your cancer treatment medications.
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How wonderfully curious children are! Sounds like good questions to me as well. They can be so curious at different ages. @WestWind I think that it is amazing both your sons have been a pivotal part in your journey and continue to be. Sounds like having a doc that you can ask general questions to regarding your own journey has been good for you too.
Thank you for your support with our other friend. I am sure she will find the info useful. And you are right about the term "palliative" and what people think it is versus what is actually is. I like saying its a term because it truly describes it better than a word. I am sure she will figure it out and hopefully there is a way for some of the treatments to be paid for somehow here. Out of pocket USA med costs can balloon quickly.
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@Strongwoman. Thanks for your kind words. It is amazing how quickly costs can add up:: transportation to cancer treatment sites, different articles of clothing like head coverings, wigs, over the counter meds. It must be very difficult for people with very low incomes but at least we can save receipts for income deductions and in B.C. even OTC meds are paid for if they are required for cancer treatment complications such as laxatives and a few other items. I am so glad that palliative Pharmacare covers so much but there really are additional costs such as I often have to use taxis to get to the hospital for lab work and unfortunately since diagnosis I have had to call the ambulance four times at about $85 per trip. This is all tax deductible apparently but people must pay first then wait a year to claim it. Cancer treatment is eexpensive.
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@WestWind Yes, costs can add up quickly, that is for sure. Thankful that some can be reimbursed via taxes. It is also keeping track of it all for the accountant that is or can be daunting for some. I do it in a chart form to make it easier and what they can use, they do and if they don't need it that is fine too. Yes calling emergency services if you needed them can add up as well. I am thankful I have been able to get there on my own and not had to use the ambulance. I don't imagine the ride there is very comfortable either. LOL trying to put some humour in it all.
The long and short is this, we do what we do when we can and the best we know how. We seek advice and info on this site and chat with peers who have been through it. All good to help us on our own healing journey.
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@Strongwoman !eeping a chart is a very good idea. I have, at the moment, just stuffed all my receipts in a compartment of my purse. I need to get organizing them before the task becomes monumental. Unfortunately I have very limited ride finding access and because I have breathing problems can’t drive myself becauuse the handicapped parking at our hospital is too far away for how weak the chemo has made me feel and how little breath I have. But at least there are taxis. We do all cope the best we can.
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