Consult with ME regarding extreme sensitivity to chemo regimen

Scotgirl
Scotgirl Member Posts: 31
in Uterine/Endometrial Cancer #1

hello, to everyone, my best wishes to all for the upcoming holiday season

I wanted to update everyone on my consult with mgy medical oncologist today regarding all the many side affects the chemno regimen has given me. I also want to thank everyone for their guidance and opinions which gave me strength and encouragement to ask the necessary questions.

#2 chemo of 6 bromught new problems to the fore front, neuropathy being the scariest for me. On a scale of 1-10, ten equaling the need for a walker because of the pain and numbness it was a 5/6 when it first appeared. Today it is about a 4. I explained to her that this is my limit, I do not want this to worsen with treatment, which from what I understand, it most likely will. since my next treatment #3 of 6 is next Tuesday, she wants to see how the neuropathy is on Tuesday and if it has not improved she will knock the Taxel down by 25%. After that if it continues to escalate she will eliminate the Taxel and just continue with the Carbo. Last resort would be to stop the chemo treatments all together. So, that's where I am. It is a difficult place as a patient, we are left to make decisions on our own about our future without defined outcomes because there just isn't enough data on this rare, aggressive cancer cell. But quantity of years versus quality is such a personal thing. I felt like such a healthy, vibrant sixty-four year old before this started and as a result of the chemo I don't recognize myself physically or emotionally.

I also have had extremely elevated BP and pulse to the point of being scary, just since last chemo. MY ME didn't bat an eye when I tried to discuss that it might be chemo related. She said I should see my cardiologist since they are not the experts when it comes to that. She tried to tell me that it was anxiety caused not chemo. I have monitored by BP and pulse for the past two years because I was diagnosed with "white coat hypertension" prior to my cancer diagnosis with no need for BP meds at the time. So I know what is normal for me and the BP that I have been experiencing is crazy high. So I am off to another dr outside of the cancer treatment center to help me resolve problems that the chemo has caused. I will also have to see my dermatologist for the chemo rash which has escalated with chemo #2. So besides chemo treatments and radiation I now have to squeeze in appointments to my ENT for hearing loss, cardiologist for elevated blood pressure and dermatologist for chemo rash. 

I know how serious this cancer cell is and recurrence rate is high but the question is, when do I say "uncle" To all the side affects. It is an ongoing emotional and physical battle. So we will wait to see what next Tuesday brings. I am also dealing with a low ANC which may require a NEULASTA shot which I am also opposed to, want the daily Neupegen shot as a more measured controlled avenue, but she gave me a hard time with that path today.

thanks for listening, ladies, you truly are the best. When my doctor says stay off the discussion boards, I get furious with her. At least I get a real picture, not just vague monologue of protocol that has probably been recited a million times to who knows how many patients that walk through the treatment center's doors.

again, all my best wishes for a holiday season that brings some peace and contentment to all with a bright and hopeful new year.

 

 

 

Comments

  • janaes
    janaes Member Posts: 799 Member
    edited November 2016 #2
    Im so glad you got to tell

    Im so glad you got to tell your doctor how you really feel and i am glad there is a plan in place for your neropathy.  I am only 44 years old and before treatment i was pretty vibant and felt pretty young.  I had gone for a mile (Ireally cant remember how far maybe more than a mile) bike ride for my fortyth birthday.  It felt great.  There were times during chemo treatment that I felt seventy.  I hated it.  Now that its over i dont feel seventy but i dont think i feel as young as I did. There is a nice little balence between getting the treatment a peson needed and having a good quality of life as well. Thats what I think anyways.  I do feel happier these days with how far I have pogressed even though its night like it used to be.  Maybe I will get back on a bike next spring when it gets warm again. 

    Best of luck as you go forward.

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited November 2016 #3
    It will be good to find out

    what the other doctors have to say- it's always good to have more eyes and brains focused so nothing is missed.  They also lowered my taxol by 25% but not until my 5th treatment.  I really think the acupuncture and supplements helped to lessen the effects and I am finally getting a little stronger as the days go by with only my right foot really bothering me from time to time. 

    I'm glad you are advocating for yourself and know your own body so well- you live there and not them so of course they should pay attention to everything you have to say. 

    My Dr. warned me repeatedly about not looking at the internet but I'm someone who likes to know how things go and then I can form an informed option for myself.  I understand that there is a lot of old information and scary things that are posted out there but it helped me to feel a little more in control.   I didn't find this board til after I was done with chemo- oh how I wish I had found it earlier! 

    I also had to have the Neulasta.  I was so totally against it but they said they would not treat me unless my neutrophils were above 1.5 and my body just couldn't recover quickly enough so after being turned away from a treatment (gulp- worst feeling ever) I went ahead.  I made sure to take the claritin which helped with the bone pain I guess.... I didn't ever not take it so I don't know how bad it would have gotten.  I do have to say it was super easy to go home with the Neulasta in place and the next day it went off for 45 min and done.  I'm not sure why she was so opposed to you going in daily for Neupegen???

    Wishing you all the very best as you make your appointments and decisions.  I'm sorry you don't feel like yourself and I wish you the best finding your new normal.....  I don't know myself yet either, but I'm working on it..... be kind and gentle with yourself.....We are with you  (((HUGS)))  <3<3

  • Kvdyson
    Kvdyson Member Posts: 789
    edited November 2016 #4
    Scotgirl, so sorry that you

    Scotgirl, so sorry that you are not getting the support that you need from your oncologist. I can't recall whether you had already gotten a second expert opinion from another but if not, maybe that is something you should consider? From my understanding, it is not unusual to have to consult with specialists outside of the oncology department for problems caused by the chemo. Hopefully those doctors are more understanding and can help you.

    It is clear that you do not want the Neulasta shot but just wanted you to hear from another person who had it with every cycle and had relatively few negative side effects from it. Of course, everyone is different and my chemo meds were different than yours, too, but nonetheless, if it is your only option to be able to continue treatment, please consider it.

    Hoping that your treatment next Tuesday goes well and that you begin to feel stronger every day. Kim

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited November 2016 #5
    Taxotere instead of Taxol?

    When intense neuropathy became a problem for me with Taxol, my oncologist switched me to Taxotere. It's supposed to be in the same class of chemo drugs known as taxanes (derrived from the yew plant) with less or milder side effect issues than Taxol. It's supposed to be as effective as Taxol, so you lose nothing from switching. I'm not sure why Taxol is the go to drug over others in this group to start treatment, its just that it seems like that's what everybody starts on to see how they handle it and adjustments or changes get made from there. I'm surprised that hasn't been offered as an option for you, so you may want to ask about it. However, lowering the dose of Taxol, as is being proposed for you, or keeping it the same but infusing it over a longer period of time are other options they have for managing side effects, so it's not like they aren't trying to help you. Different doctors have different approaches to chemo.

    Another thing to look into is B12. It's not an instant fix, but it's very possible that you could be deficient in active B12 because cancer and chemo are known to convert as much as 80% of a body's B12 into its inactive form. B12 is essential for nerve function and nerve healing, so it's something to look into. It won't make things better quickly, but will give you some hope for the pain eventually lessening. I was started on B12 shots monthly just before my second infusion and thereafter until just before my last infusion as well as taking an oral supplement during and since. It took about 2 months for the pain to start to noticably abate, but 3 months out from chemo my neuropathy is hardly noticable, so I'm a believer. B12 supplements are very safe to take, whereas too much B6 or folate can be harmful. Your dr. may want to do a routine B12 lab test to check your level first, but that can be misleading since it counts both the active and inactive forms of B12 for the total without distinguishing between the two. A lab tech suggested requesting a test called an MMA that would be more sensitive for detecting B12 deficiency than a routine B12 test.

    For immediate help with the pain you're dealing with now, consider getting a couple of pairs of hypothermia slippers that can be found on Amazon. They really helped me to cope and I don't think I could have gotten through chemo without them. There are drugs that your oncologist can prescribe if those don't help, but they have their own set of side effects that come with taking them that the slippers do not have. 

    I was just like you with not wanting the neuropathy to get any worse and upset with how I'd be made sick again every time I just started to feel better. I  was also real worried about what I was experiencing becoming permanent. We're all different, but hopefully my experience will give you enough hope so that you can make it the rest of the way through your chemo. It's a battle to do, that's for sure!

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