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pianolady
pianolady Member Posts: 19

Two weeks ago I had an anaphylaxis reaction to Taxol, a drug that had been easy for me before. This past Tuesday my m.o. decided to start me on low- dose weekly adriomycin, which was sheer hell at full dose seven years ago. I started to cry the minute he mentioned it, at which point he told me I was looking backwards, not forwards, and that I was risking bring on the symptoms that I dreaded by being so upset. Then he said he "swore" it would be different this time. Two hours after the infusion i started vomiting violently, for 15 straight hours, followed by uncontrollable diarheaa. Yesterday I was back at the center getting IV fluids and emend. Today I managed a piece of dry toast and some sips of water, along with ativan and zofran. Now I feel like he blames me for my own symptoms and I want to go in and start screaming! Up until I have loved this doctor. Ugh...isn't it enough that we have to deal with the disease, without patronizing doctors?!

Comments

  • lehrski
    lehrski Member Posts: 94
    edited October 2020

    Hugs! I’m so sorry to hear about your callous and thoughtless doctor. As if you could cause those symptoms. Hope your tummy settles soon

  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2020

    Pianolady, i cannot offer any advice only sympathy. I'm very sorry you had these two very traumatizing experiences, especially so close to each other. Perhaps a second opinion from another oncologist to either ease your mind or find another treatment that might work.

    I'm a bit worried about your experience because I just started Taxol and will have three doses in a month. After scan in December or January, if it's not working, the last treatment for me is adriamycin. I have feared the Red Devil since my diagnosis in February, 2013.

    Please keep us posted. I believe in the power of prayer so you will be remembered in my nightly prayers.

    Amy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2020

    ugh I am so sorry you are having this experience and that the doc is not more understanding. Saying being upset will cause symptoms is unscientific victim blaming

    A thought - would Abraxane be a possible treatment? I know it was developed to avoid the reactions / allergies some people have to taxane chemo? Not sure if it would be safe in your case but maybe something to ask about?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2020

    pianolady - having contended with the full strength red devil myself at early stage, I can COMPLETELY understand your reaction to having to revisit it even at a lower dose. The reaction of your MO was not compassionate whatsoever and your absolutely not to blame for your symptoms. Emend seemed to help better with nausea than Aloxi which they gave me on my 4th dense dose rather than Emend - I still needed to rotate the nausea meds tho, 30 mins after I was done each time I felt like I wanted to throw up but couldn't, awful. Try to get some electrolytes down if you can. Gatorade or Propel that helped on days i couldn't eat much, it helps keep you hydrated through the big D too and even helped lessen mine. I heard Pedialyte can help too. I would repeat what you said to us to your doctor. Sometimes doctors get so caught up on treatments/compliance etc and they forget the patient, a gentle reminder wouldn't hurt your MO. I'm so sorry your having a rough time and have had to visit an old foe. I hope the symptoms ease up and tho its been unkind symptom wise, its kicking cancer cell behind. All the best to you :) Are they giving you Emend with the infusion, any chance they could increase a bit, maybe give you Ativan as well preventatively? I hear for severe nausea there is a patch they can give you too.

    Amy :) there is a lady here 50sgirl doing weeky low dose Adriamycin and doing well. The red devil has a split personality, its harsher to some than others. I'm hoping Taxol works wonders for you :)

  • illimae
    illimae Member Posts: 5,710
    edited October 2020

    I 2nd asking about abraxane. I had severe reactions to taxotere and taxol before switching to abraxane, which was much easier and still very effective. Good luck :)

  • pianolady
    pianolady Member Posts: 19
    edited October 2020

    Radaghast Rabbit, I also found Emrnend more effective than Aloxi. I went in the next day for it and Ativan. But I can't envision anything that would make this doable as a weekly drug. I will definitely ask about Abraxane. Also I've never had Gemzar. Don't know anything about that one. Thank you, everyone! I dont see the M.o.for 2 weeks so hopefully I won't bawl when I talk to him.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2020

    pianolady, doesn't seem like the weekly devil is a good longterm fit, was just trying to think of ways to try to make it better or tolerable while your on it or dealing with post side effects before you switch. QOL is important, go with the Abraxane. Let us know how it goes! :)

  • moth
    moth Member Posts: 4,800
    edited October 2020

    pianolady, oh gosh how awful that's been for you
    Does gravol make you sleepy by any chance? It was my go to 'extra' when on adriamycin (after they loaded me up with all the fancy RX meds) because then when I'd take a gravol it would make me doze off and I'd sleep through the worst of the nausea. I'd rather be sleeping/dozing and not retching than awake and miserable for a day.

    I'm going to post a link to the BC Cancer agency protocol for nausea/vomiting. Adriamycin is the "HEC" category on the table on p.2. Just so you can see if you're getting all the things that are recommended. Then if that doesn't work, there are other things they can pile on top. Their goal is NO nausea/vomiting. There's a flow chart on p. 6 which goes through escalation of care. http://www.bccancer.bc.ca/chemotherapy-protocols-s...

    I'm also surprised they a) didn't do a 2nd trial of taxol run much more slowly &/or with more premeds or b) switch to abraxane. Also did you have all the premeds? Steroid + benadryl + ranitidine.

    As for the doctor - is this an ongoing thing? Can you ask to switch to someone else in the practice? I have to say I give MOs a lot of leeway because I think their jobs suck. They do all they can but so many of their patients are dying every day and I think that takes its toll. I know, I know, it's part of the job but everyone is extra stressed - with covid, with treatment delays, with PPE shortages, I just feel everyone is extra prickly and over tasked. I remember when I was in school people asking me if I wanted to go work in oncology given my brush with then early stage cancer & I was like ARE YOU MAD? I'D HATE IT. Nope. nope. nope. I'd sooner do hospice. There you know the outcome. Here you're still frantically trying & spinning a hundred plates.

    But, as a patient, we always want to and deserve to be treated the best. You could write him a quick note. "Hey, I feel like you didn't give me your best that day, and blamed me for my body's reactions to the medicines. I know your job is hard and I know you also know my life and illness are hard. I hope our next appt is nicer for both of us."

  • pianolady
    pianolady Member Posts: 19
    edited October 2020

    Thanks for your detailed response, moth! It looks like I got everything I was supposed to. Ever since I was a little girl I would vomit endlessly from everything. I remember being given phenobarbital back in the dark ages. I got all the premeds for taxol. They gave me more steroids and tried it again slowly but my O2sat immediately went to 86. Maybe I can talk about abraxane at my next visit. But they were ready to intubate me so they were pretty nervous. Hopefully we find something. My m.o. is always worried about neuropathy because I'm a pianist, but I need to make it clear that I consider those days in the past. I'd rather listen to my students play than be puking!

    Ordinarily i love my m.o. Its been a terrible 2 weeks both physically and mentally, so we have to cut each other slack. I agree that their job SUCKS. But so does ours!

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