Severe reaction to carbo platinum

My husband, Vic, was diagnosed with Stage IV NSCLC in August "06. It was non operable. He had a round of six chemo treatments: taxol with carbo platinum. It worked great. He had almost a 50% reduction in tumor size. His doctor was happy and said he could have a break from chemo and would need a 3 month CT scan to monitor any changes. Vic felt great -almost back to normal (he has had pain and numbness in his feet and hands from the chemo.) We were totally unprepared for the results we received at that 3 month doctor's appointment. Our doctor gave us the news the cancer was growing back and rapidly. The next week Vic started a 3 week on and one week off of the same treatment -taxol with carbo platinum. On his fourth treatment his blood pressure dropped to 60/30 and he was starting to lose consciousness. EMS was called and an ambulance took him to the hospital. His oncologist said "we almost lost him."The doctors think he had a severe allergic reaction to the carbo platinum. He is fine now but we are scared. . Vic has an appointment with his doctor for a consult but no chemo. He needs to have tests for heart damage due to the drop in his blood pressure and an irregular EKG test following his allergic reaction. Basically -help! Where do we go from here? Has anyone else had this problem and what treatment are you receiving? Any advice would be appreciated.

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Been there, done that. Most people commonly experience taxol allergic reactions and think this is what you are talking about. Wrong!!

What they don't tell you, and what a lot of people don't know, is that if carboplatin is used for an extended period of time you can have a horrible allergic reaction to it. We had the same thing happen and almost went into shock. Most people don't go those "extra" treatments and are unaware of this potential. They usually only have 4-6 treatments. The reaction typically hits on the 7-9th treatments. It is very frightening. They did re-try the carbo the next cycle by having my husband take steroids for a few days before, but it didn't work. This time the flow was stopped fast enough to avoid the whole shock mess again.

There are still many options available for your husband. We don't get any time off either because of how fast cancer grows while not on treatment or even while on treatment.

There is:
Taxotere Gemzar Tarceva Alimta Avastin Navelbine Taxol (again)

Any platinum based drugs will be unable to be used after this reaction. I've probably missed something, but you get the idea that there is more out there for your husband. We've done almost all of the above and had success with each one for some period of time, except Tarceva, which is the one the oncologist really hoped would work.

Best Wishes for more success on the next line of treatment. What your experience tells me is that your husband has a very aggressive oncologist who is willing to push the envelope with the treatments. Why move on if the treatment is still working? Good oncologist means good for you two!!

Razz

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Razz is correct. You're not supposed to do it a second time. Usually, permanent nerve damage occurs. Platinum is a heavy metal and deposits inside the neurons.

I do not understand the 3 month period "off" of treatment. He should have received Avastin during and after the chemo to keep cancer growth in check, OR Tarceva should have come after the chemo, OR radiation should have come after the chemo. With cancer doing nothing is deadly.

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Razz

Just a thought. Rather than using a steroid, why don't they use a chelating agent to remove platinum before starting the next round. Right off hand I can not think of a drug that would prove effective at chelating platinum, but maybe that would make it possible to go for more rounds.

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echee,

As Raspberry said "been there done that" also. Had reaction to Carbo after 7th round. Tried the following week and happened again. Doc switched me to Taxotere and kept things stable for about 7 months. Tumor started to grow again & went for IMRT radiation. Finished radiation 6-7 weeks ago& have CT tomorrow.

Merlin

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I only had 4 treatments of taxo/carbo but the 4th treatment was the worst. I told my oncologist that I was glad that was the last treatment because I couldn't tolerate another one. His comment was 'that's why you only had 4'. Like Razz said, after so many treatments, we have a higher risk of developing complications. I'm glad your husband is doing better now. I hope his EKG test is ok.


Bette

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I had a reaction to Carbo on my second treatment. Within 15 minutes of starting the 2nd treatment, they had to stop because I could not breathe, skin turned red and tons of pain. They stopped the treatment (Thursday Morning) and I went home to rest. Friday evening the reactions came back and stronger. My wife(an RN) and doctor thought I was having a heart attack and was admitted to the hospital for overnight ops. Nothing so they thought it was a reaction to carbo.

My treatment was changed to daily radiation and weekly chisplatin. Four weeks into the treatment, the reactions came back. This time I was in the doctor's office when it came so they caught it quickly.

So now, I cannot have any of the platin family of drugs. GOOD. I have ringing in my ears and have lost some of my hearing. I have completed all of my treatments and waiting on my CT scan to see where I am at with my cancer. Hopefully it will be good news.

Now I am off my treatment I am feeling much better and getting back to normal. Hopefully, your husband will too. The platin family of drugs is really hard stuff to take and am glad I am off if it.

Richard

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Ray,

The body usually needs a break after that many cycles of combo chemotherapy. We didn't take the break and following eight cycles of taxol/carbo it was on to twelve cycles of taxotere/gemzar.

During a break the oncologist can assess what the cancer is going to do. Some people have very slow growing cancer, where others have rapid progression. I think that the three month break for us was the only question mark we had about treatment. We knew that my husband could easily have moved onto Tarceva after a much shorter break and not waste time. But, live and learn.

Razz

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Wow, you were on Carbo only (without taxol) and had the reaction?

I'm surprised they gave you cisplatin after that as our oncologist said once you react to a platinum based drug, you will always react. We've asked about reintroducing this almost two years later and he still is not willing to try it again on my husband.

I was aware of the whole hearing issue, have seen others at the office experience this problem, and I'm sorry that this happened to you. Chemo just plain sucks.

There are some methods of trying to reintroduce platinum based drugs and regain tolerance. It doesn't seem like oncologists are too on board with the idea as it is very time consuming for their staff.

Best of luck to you!
Razz

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Hey -- good luck on your CT scan!! Sending high hopes for a great report.

Razz

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Hi Ray, We will ask our doctor about steroids or a chelating agent. Vic's doctor said radiation won't work because it's already metastized. He feels he needs to treat the whole body.

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Vic and I want to thank everyone for responding. It took me awhile to find the responses because when I logged on to the site it said "you have no unread messages." Then I realized I had to go back to where I posted my questions. It is so wonderful to have this site and so many compassionate and helpful people. I think we really would go crazy without all of you. I heard a song called CRAZY by Knarles Barkley on the radio and I think it could be our theme song. We're going to take your suggestions to the doctor on Thursday, June 3rd. I'll let you all know what the next step is. Do I go to this same discussion site?

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I was taking Taxol with the carbo. It was just a really bad thing. The doctors thought I could take the cisplatin since it was a really small dose. The Carbo was a full dose. Anyway you look at it...I had a reaction. I did really well with the Cisplatin until it came down to my last treatments. Four weeks of treatment and no reaction. On the fourth, I went to the hospital.

But right now I am feeling really good and ready to get working again.

Richard

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my husband has had 2 treatments with cisplatin/taxotere. at the second treatment, when they added the taxotere he had a terrible allergic reaction- turned purple and had chest pain. they wanted to reintroduce it the next day so they loaded him up with oral and iv steroids and diluted the taxotere from one tiny bag into 3 big bags. they dripped it in one drop at a time to start and it took 7 hours but he got the whole dose. it is too soon to discontinue these first line drugs but i wonder if there is any way to tell how far you can go with the cisplatin before it should be stopped to prevent the reaction you describe? don''t know how the third treatment will be given yet. so far, thank god, side effects have been some fatigue and gi problems. hope everyone has good response from the drugs. arlene

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Echee,

I'd say that you could start a new thread in the discussion for your husband's visit. It will make it easier for people to see that new info is being posted.

Good luck!
Razz

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I'm really glad to hear that things are going well for you Richard! Keep up the good work.

Razz

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Hi Richard, I'm glad you're feeling better. Vic and I are so sorry you had to experience a bad reaction to the carbo more than once. Once was so scary and horrible we can't imagine going through it again. It's good they were able to rule out a heart problem. How long have you been off chemo?Good luck with your CT scan! Eileen

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Hi Razz, The information you provided is so helpful and reassuring. Vic's reaction happened on his 10th treatment and the chemo dose was lower, but more frequent, than the first round of six. Vic's sudden reaction came as a complete shock to us and even scared my husband's oncology doctor and staff. We were so stressed and depressed and thought he had a heart attack. Your response helped us a lot. At first I didn't think anyone had responded and then finally navigated myself to the right place. I am definitely lacking in tech skills, but I keep trying. This site and everyone on it is such a lifeline. What a relief to know this is not a rare situation and that there are other possible treatments. Eileen

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The taxol/taxotere reaction is, unfortunately a common allergic reaction. It sounds like your doc has slowed the drip and loaded the steroids to avoid another reaction to that. Whew! These reactions are very frightening. The slow drip does make for a long day -- I remember them well.

As far as the carboplatin goes, IF a reaction is going to happen, we were told that somewhere between 7-9 cycles is where they will typically see a reaction. My husband was on the once every 21 day cycle full dose carbo/taxol duo.

Our glitch was we had to go to the local hospital for the infusion due to unavailability of Taxol during that time frame. The nurses there decided not to mention the possibility of this carbo reaction because they thought that maybe my husband could mentally induce the reaction if he knew it could happen. We did not agree with their logic.

So tra-la-la we were sitting there for the 7-8 hour infusion as usual when it hit him like a ton of bricks. We were so upset that they didn't warn us or sit by him to monitor the carbo infusion. They didn't stop the drip immediately, which threw him into a worse condition. He started with slight itching sensation in his hands which was quickly followed by turning beet red and burning up. His blood pressure tanked, couldn't breath, was dizzy, disoriented, and almost passing out. Twenty-one days later, at the same hospital, the nurse sat with him when they began the carbo infusion. The minute the itchy hand thing started, they shut the drip off immediately.

I don't know if you are better off knowing that this CAN happen or not. As long as the topic was raised, I thought I'd share our experience. We wish we knew this was a possibility. We don't think that the nurses at the doctor's office, who normally do the infusion, would have allowed it to go that far or would have told us what to expect. Maybe it is good for you to know so you can monitor your husband.

Very best wishes for good things to happen for everyone fighting this disease.
Razz

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