Recurrence

Orchid65
Orchid65 Member Posts: 35 Member
in Uterine/Endometrial Cancer #1

I had total hysterectomy in January, internal vaginal brachytherapy in March and now found out the cancer recurred in a para-aortic lymph node.  Surgery is scheduled for June 29th.  Doctor says I may need follow up chemo and radiation therapy.  I am not looking forward to this. Has any one had any experience with integrative treatments?  Has any one heard of Chlorine Dioxide Ion to treat cancer?

«13

Comments

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #2
    I have no experience with

    I have no experience with other treatments, but I'm sorry you  have to deal with a recurrence already. Chemo and radiation can be hard, but most find them more doable than they expect. May I ask how you came to find out you had a recurrence?

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #3
    Orchid, I'm so sorry to hear

    Orchid, I'm so sorry to hear this.  I was worried all along that this would happen, because you had a high-grade tumor located in the fundus, with lymphovascular invasion.  Surgery, followed by chemo and radiation, I presume.  They could very well get this under control for you.  The things that I was glad I'd found out beforehand, or wished I'd found out beforehand:

    Ice your hands and feet before and during and even slightly after the infusion, if you're having TAXOL.  I used a heating pad on my abdomen so I wouldn't freeze, and I plunged my feet and hands into ice water.  Hopefully, your cancer infusion center will have the cold booties and gloves for you to wear, but ice water worked well for me.  Your partner will need to make sure hands and feet are being kept cold while you fall asleep from the benadryl pre-treatment.

    If you don't have an allergic reaction, ask the oncologist to decrease your steroid pretreatment if possible, so you're not hopped up for days afterwards.

    A week before the radiation begins, start on a probiotic.  I think I used Culturelle, but there are others, too.  It made an immediate difference in the radiation-induced diarrhea for me.

    I'm so sorry you're going through this.  I'm very hopeful that the treatment will help.

    I never heard of using Chlorine Dioxide Ion, but I looked it up, and it sounded like there was no evidence of efficacy.

  • Molly110
    Molly110 Member Posts: 191 Member
    #4
    taxol

    I'm so sorry you have more treatment to undergo and hope it is smooth sailing. I finished chemo in mid January and want to encourage you to follow ZsaZsa's advice if chemo is part of your treatment and includes Taxol or related drugs.  Despite using the cold mitts, which my center did not provide -- I had to get them myself -- I developed pretty serious chemotherapy-induced peripheral neuropathy.  If I'd known then what I know now, I would do just what ZsaZsa did and immerse my hands and feet in ice water, as I think that gets them colder than the cold mitts. 

     

    Everyone is different, of course, but if it helps to hear this, the actual experience of the chemo treatment rounds was not painful or difficult for me. I expected it to be and was so terrified that I almost chose not to do it.

     

    All good wishes to you,

    Molly

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,512 Member
    #5
    Orchid, I am sorry to hear

    Orchid, I am sorry to hear this.  Why are you asking about chlorine dioxide ion?  Here is a link with some information.  After reading through it, it does not apprear to be a treatment for cancer, so please be careful of anyone advising it, and I would suggest asking your doctor.  

    https://www.chemicalsafetyfacts.org/chlorine-dioxide/

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited June 2020 #6
    Chemo

    Orchid, I am so sorry that you are having a recurrence so soon after your frontline treatment. While none of us have ever looked forward to chemo and radiation, most have found it doable, especially with the help of each other. We'll be here for you.

    The thing to keep in mind is to speak up about symptoms as they occur right away. Do not try to suffer through the least thing except fatigue (which you should give in to). Your oncologist and the chemo nurses have many tricks in their bag to help you to cope with what comes up and there is a lot of experience here on this board to draw from.

    I think all of us can agree on the critical importance of icing hands and feet during infusions to prevent neuropathy. Your doctor can also change the drug used (Taxol is the go-to to start, but there are others equally effective they can switch to) or its dosage or infusion rate if that doesn't work, so be sure to let them know how you are doing when that first dose kicks in. 

     

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited June 2020 #7
    Nausea meds

    And be sure to take the nausea meds prophylacticly. Don't wait to get nauseas. 

  • jan9wils
    jan9wils Member Posts: 209 Member
    #8
    All good advice above. I am

    All good advice above. I am having terrible neuropathy and did not know about icing. Wish I had as it may have helped and certainly cannot hurt. I also had terrible mouth ulcers from chemo and if that happens there is a good compound that can be prescribed for you. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #9
    jan9wils said:

    All good advice above. I am

    All good advice above. I am having terrible neuropathy and did not know about icing. Wish I had as it may have helped and certainly cannot hurt. I also had terrible mouth ulcers from chemo and if that happens there is a good compound that can be prescribed for you. 

    Mouth ulcers

    During chemo I was very careful to rinse my mouth with the baking soda/Salt\water mix recommended every time I ate something and fortunately had no problems with ulcers. 

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #10
    LisaPizza said:

    I have no experience with

    I have no experience with other treatments, but I'm sorry you  have to deal with a recurrence already. Chemo and radiation can be hard, but most find them more doable than they expect. May I ask how you came to find out you had a recurrence?

    PET scan

    My Radiation oncologist had found a lung nodule on my CT scan just before my hysterectomy surgery in January.  The doctor wanted to see if there was any change in the nodule, and had me scheduled for a CT scan on May 14.  There was no change in the lung nodule, but she found a growth in the left para-aorthic lymph node.  She had me have a PET scan a week later.  She thought it was cancer and recommended radiation and chemothrapy.  After conferring with another oncologist, they thought that surgery was the best option. 

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #11
    zsazsa1 said:

    Orchid, I'm so sorry to hear

    Orchid, I'm so sorry to hear this.  I was worried all along that this would happen, because you had a high-grade tumor located in the fundus, with lymphovascular invasion.  Surgery, followed by chemo and radiation, I presume.  They could very well get this under control for you.  The things that I was glad I'd found out beforehand, or wished I'd found out beforehand:

    Ice your hands and feet before and during and even slightly after the infusion, if you're having TAXOL.  I used a heating pad on my abdomen so I wouldn't freeze, and I plunged my feet and hands into ice water.  Hopefully, your cancer infusion center will have the cold booties and gloves for you to wear, but ice water worked well for me.  Your partner will need to make sure hands and feet are being kept cold while you fall asleep from the benadryl pre-treatment.

    If you don't have an allergic reaction, ask the oncologist to decrease your steroid pretreatment if possible, so you're not hopped up for days afterwards.

    A week before the radiation begins, start on a probiotic.  I think I used Culturelle, but there are others, too.  It made an immediate difference in the radiation-induced diarrhea for me.

    I'm so sorry you're going through this.  I'm very hopeful that the treatment will help.

    I never heard of using Chlorine Dioxide Ion, but I looked it up, and it sounded like there was no evidence of efficacy.

    Suggestions

    Thank you for the suggestions.  I will look into them as the time draws nearer for these treatments.

  • Orchid65
    Orchid65 Member Posts: 35 Member
    edited June 2020 #12
    Molly110 said:

    taxol

    I'm so sorry you have more treatment to undergo and hope it is smooth sailing. I finished chemo in mid January and want to encourage you to follow ZsaZsa's advice if chemo is part of your treatment and includes Taxol or related drugs.  Despite using the cold mitts, which my center did not provide -- I had to get them myself -- I developed pretty serious chemotherapy-induced peripheral neuropathy.  If I'd known then what I know now, I would do just what ZsaZsa did and immerse my hands and feet in ice water, as I think that gets them colder than the cold mitts. 

     

    Everyone is different, of course, but if it helps to hear this, the actual experience of the chemo treatment rounds was not painful or difficult for me. I expected it to be and was so terrified that I almost chose not to do it.

     

    All good wishes to you,

    Molly

     

    Peripheral neuropathy

    Thank you for the comments.  Can you tell me what peripheral neuropathy is?

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #13
    NoTimeForCancer said:

    Orchid, I am sorry to hear

    Orchid, I am sorry to hear this.  Why are you asking about chlorine dioxide ion?  Here is a link with some information.  After reading through it, it does not apprear to be a treatment for cancer, so please be careful of anyone advising it, and I would suggest asking your doctor.  

    https://www.chemicalsafetyfacts.org/chlorine-dioxide/

    Chlorine Dioxide

    Thanks for the link.  I forwarded to my two aunts that are taking it now.  They had recommended it to me.

  • Orchid65
    Orchid65 Member Posts: 35 Member
    edited June 2020 #14
    MAbound said:

    Chemo

    Orchid, I am so sorry that you are having a recurrence so soon after your frontline treatment. While none of us have ever looked forward to chemo and radiation, most have found it doable, especially with the help of each other. We'll be here for you.

    The thing to keep in mind is to speak up about symptoms as they occur right away. Do not try to suffer through the least thing except fatigue (which you should give in to). Your oncologist and the chemo nurses have many tricks in their bag to help you to cope with what comes up and there is a lot of experience here on this board to draw from.

    I think all of us can agree on the critical importance of icing hands and feet during infusions to prevent neuropathy. Your doctor can also change the drug used (Taxol is the go-to to start, but there are others equally effective they can switch to) or its dosage or infusion rate if that doesn't work, so be sure to let them know how you are doing when that first dose kicks in. 

     

     

    Comments

    Thank you for your comments.  I will keep them in mind.

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #15
    CheeseQueen57 said:

    Nausea meds

    And be sure to take the nausea meds prophylacticly. Don't wait to get nauseas. 

    Nausea meds

    Thanks for the tip.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited June 2020 #16
    Orchid65 said:

    PET scan

    My Radiation oncologist had found a lung nodule on my CT scan just before my hysterectomy surgery in January.  The doctor wanted to see if there was any change in the nodule, and had me scheduled for a CT scan on May 14.  There was no change in the lung nodule, but she found a growth in the left para-aorthic lymph node.  She had me have a PET scan a week later.  She thought it was cancer and recommended radiation and chemothrapy.  After conferring with another oncologist, they thought that surgery was the best option. 

    Nausea

    If you opt for radiation, be sure to take nausea medicine before. I was radiated high because I also had that positive lymph node. Because it's so high, can cause nausea. 

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #17
    jan9wils said:

    All good advice above. I am

    All good advice above. I am having terrible neuropathy and did not know about icing. Wish I had as it may have helped and certainly cannot hurt. I also had terrible mouth ulcers from chemo and if that happens there is a good compound that can be prescribed for you. 

    Chemo

    Do you know if there is a standard treatment of Chemo drugs used?  Are there different strengths of the drugs use?  Do you know if cancer in one lymph node can easily spread to the entire lymphatic system?

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #18
    jan9wils said:

    All good advice above. I am

    All good advice above. I am having terrible neuropathy and did not know about icing. Wish I had as it may have helped and certainly cannot hurt. I also had terrible mouth ulcers from chemo and if that happens there is a good compound that can be prescribed for you. 

    Neuropathy

    What is neuropathy?

  • Orchid65
    Orchid65 Member Posts: 35 Member
    #19
    CheeseQueen57 said:

    Nausea

    If you opt for radiation, be sure to take nausea medicine before. I was radiated high because I also had that positive lymph node. Because it's so high, can cause nausea. 

    Nausea

    So nausea can be caused by radiation as well as chemotherapy?

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited June 2020 #20
    Orchid65 said:

    Nausea

    So nausea can be caused by radiation as well as chemotherapy?

    Yes!

    Yes, if you're radiated that high. I went in for what I thought was my "fitting" but they radiated me that same morning. My nausea was horrible. But when I took the Zofran in advance, no problem. Good luck. 

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #21
    Orchid65 said:

    Chemo

    Do you know if there is a standard treatment of Chemo drugs used?  Are there different strengths of the drugs use?  Do you know if cancer in one lymph node can easily spread to the entire lymphatic system?

    The standard chemo for

    The standard chemo for endometrial cancer is paclitaxil and carboplatin, but there are other drugs and combinations. I like this reference site:

     

    https://www.cancertherapyadvisor.com/home/cancer-topics/gynecologic-cancer/gynecologic-cancer-treatment-regimens/endometrial-carcinoma-treatment-regimens/

     

    *IF* you're comfortable with medicalese, I like to go straight to the NCCN cancer treatment guidelines. You have to create an account, but it's free:   https://www.nccn.org/professionals/physician_gls/default.aspx

     

    The regimens listed at both places are the same.

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