Chemotherapy Help?

Bunnymom
Bunnymom Member Posts: 212 Member

The tumor board met today and changed my medical oncologist after I expressed my concern over how our first appointment went earlier this week. 

The original medical oncologist planned to prescribe a three-blend chemotherapy mix consisting of: 5-FU, Hydrea (Droxia, Myocel) and Taxol. She gave me the list of side effects Including feeling like your swallowing glass shards, nausea, complete hair loss, mouth sores, etc. 

I will be meeting my new medical oncologist on the 28th of May when I go for simulation (rad). I did have an email exchange with his nurse who replied to my inquiry about a cold cap. She said I wouldn't need one since the chemotherapy drugs that he will prescribe will not cause hair loss. 

Could someone share the name(s) of the chemo drugs that were prescribed to you? How did you tolerate them?

How do they determine which chemo drugs should be prescribed?

Does anyone have experience with taking chemo drugs that do not cause hair loss? I thought they all do. 

This is all a bit confusing to me and I just want to be sure that I will be taking the appropriate chemotherapy drug that will give me the best outcome. 

If anyone could share their thoughts on chemotherapy, I would appreciate it. Thank you. 

BunnyMom

 

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Comments

  • KB56
    KB56 Member Posts: 318 Member
    Chemo

    I had Erbitux and the biggest side effect was acne (which my oncologist said it meant it was working so mine must of worked really well:)).   I was a little sick the first one, which from what I understand was the largest dose as well.  other than the acne I tolerated it very well.   Even the acne went away before I was finished with treatment.    I asked my oncologist the last time i met with him why he chose Erbitux over the others I've seen people on this site receive for HNC and he said " I thought this would work for you and it has fewer side effects".   I don't know if that would be an option for you but you might ask about it.  It was all outpatient as well and I had it once a week for 7 weeks.  

    No hair loss other than where the radiation hit.  

    Keith

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Erbitux

    Bunnymom,

    I also received Erbitux along with rads following surgery.  I had the acne over my entire torso and face; I could see where it was a year later.   It made my eyebrows and eyelashes grow, my fingers spilt and a big toe nail fell off.

    I would have taken whatever the chemo onc suggested, I was still in shock at that point.

    Matt

  • ongsoonan
    ongsoonan Member Posts: 10 Member
    Hi,
    The chemo drug that I

    Hi,

    The chemo drug that I used for my NPC was cisplastin. The main side effects were fatigue, constipation, nausea, vomit but no hair loss.  

    ong

  • Guzzle
    Guzzle Member Posts: 710
    ongsoonan said:

    Hi,
    The chemo drug that I

    Hi,

    The chemo drug that I used for my NPC was cisplastin. The main side effects were fatigue, constipation, nausea, vomit but no hair loss.  

    ong

    Cisplatin

    I think the dose and frequency is relevant. IM end week 3 rads and had one cisplatin at beginning. IM due one Monday. Ive taken anti nausea meds. Getting a bit of a sore throat from rads but no effects from c

     

     

     

    hemo yet although as said only had one. Regards, G

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Chemo

    My husband had cisplatin first -- no hair lost, nausea, tired all the time, dehydration and had to have fluids.  Second round was carboplatin and barely any problems but definitely no hair lost.  Well his hair did thin somewhat.

    Just remember that everyone has a different action to any form of treatment.

    Wishing you the best -- Sharon

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    chemo drugs

    I had induction TPF - Taxotere Cisplatin and 5FU - one of them made all my hair fall out and I mean ALL except for a very thinned out area. Carboplatin during rads did not cause any hair loss or side effects.

     

    Platinum based chemo is generally proven to be more effective. Cisplatin and Carboplatin fall in this category. Erbitux is given as an alternative. 

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    donfoo said:

    chemo drugs

    I had induction TPF - Taxotere Cisplatin and 5FU - one of them made all my hair fall out and I mean ALL except for a very thinned out area. Carboplatin during rads did not cause any hair loss or side effects.

     

    Platinum based chemo is generally proven to be more effective. Cisplatin and Carboplatin fall in this category. Erbitux is given as an alternative. 

    I was told today that I would

    I was told today that I would be prescribed these two drugs:

    5-FU

    hydroxyurea

    Can anyone provide information concerning your experience with these drugs? I know everyone is different  but it would be helpful to know about side effects and the best way to handle it. 

    Thsnk you!

     

    BunnyMom

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Bunnymom said:

    I was told today that I would

    I was told today that I would be prescribed these two drugs:

    5-FU

    hydroxyurea

    Can anyone provide information concerning your experience with these drugs? I know everyone is different  but it would be helpful to know about side effects and the best way to handle it. 

    Thsnk you!

     

    BunnyMom

     

    Hydroxyurea

    My husband has been on this chemo pill for the last 11 years for a rare blood cancer and hasn't had any problems with it.  He takes 2 500mg pills daily.  Since we started this journey with laryngeal cancer, then a second primary and spread to his right lung, I have asked and asked about this drug but get no straight answers.  I know that long term use of this drug can cause leukemia and other blood cancers.  I have asked if this drug has also been responsbile for the slow spread of his cancers and still get no straight answers.  They are now using this drug for sickle cell.  Years ago this drug was the primary drug for head and neck cancers.  I was told this by two oncologists.

    Sharon

  • phrannie51
    phrannie51 Member Posts: 4,716
    I had Cisplatin....and after

    rads were over I had three treatments of Cisplatin along with a 4 day pump of 5FU.  Cisplatin caused some nausea, but only for 4 or 5 days every three weeks, and it was controlled by the meds.  5FU thinned my hair, but it most certainly didn't all fall out (I did lose all my eyelashes which grew back in after treatment). 

    I am curious about the Hydroxyurea, tho.   The only chemo's I've heard being used for oral cancer are Cisplatin, Taxol, Carboplatin, Erbitux, and 5FU.....of course, I've only been on these boards for a couple of years, and this is the first time I've ever heard of it, so I had to look it up.  What I'm seeing is that it used for leukemia, sickle cell, AIDS.....all cancers or disorders that have something to do with the blood and or bone marrow.   It is a drug used in myeloproliferative disorders (so I looked that up, too...."The myeloproliferative neoplasms (MPNs), previously myeloproliferative diseases (MPDs), are a group of diseases of the bone marrow in which excess cells are produced. ").

    So my question is....and one I think you should ask....is what is the justification of using Hyfroxyurea, and not Cisplatin or Carboplatin or Erbitux?   You have every right to know what their thinking is on this.....

    p   

  • Guzzle
    Guzzle Member Posts: 710

    I had Cisplatin....and after

    rads were over I had three treatments of Cisplatin along with a 4 day pump of 5FU.  Cisplatin caused some nausea, but only for 4 or 5 days every three weeks, and it was controlled by the meds.  5FU thinned my hair, but it most certainly didn't all fall out (I did lose all my eyelashes which grew back in after treatment). 

    I am curious about the Hydroxyurea, tho.   The only chemo's I've heard being used for oral cancer are Cisplatin, Taxol, Carboplatin, Erbitux, and 5FU.....of course, I've only been on these boards for a couple of years, and this is the first time I've ever heard of it, so I had to look it up.  What I'm seeing is that it used for leukemia, sickle cell, AIDS.....all cancers or disorders that have something to do with the blood and or bone marrow.   It is a drug used in myeloproliferative disorders (so I looked that up, too...."The myeloproliferative neoplasms (MPNs), previously myeloproliferative diseases (MPDs), are a group of diseases of the bone marrow in which excess cells are produced. ").

    So my question is....and one I think you should ask....is what is the justification of using Hyfroxyurea, and not Cisplatin or Carboplatin or Erbitux?   You have every right to know what their thinking is on this.....

    p   

    Domperidone

    Only had one cisplatin thus far and was prescribed the above which I have renamed "Domperignon". I was put on saline for 4 hoursbefore and after. Never had any nausea. I go again Monday so fingers crossed. G.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Cisplatin

    Due to pre-existing heart issues, I was given 6 weekly doses of Cisplatin along with the 5 days a week rads. I got pretty sick after the 2nd infusion and pretty much hit the wall from then on. I also had some intense (and rather rare) side effects from the steroids used during infusion. Long term is Neuropathy in my feet. I obviously didn't have a concern about hair loss ;) It's not a common one with Cisplatin anyway. 

    Cisplatin is the go-to chemo drug for H&N cancer. Drugs, dosage and frequency will vary depending on your team's plan of attack. 

    Positive thoughts and prayers

     

  • Bunnymom
    Bunnymom Member Posts: 212 Member

    I had Cisplatin....and after

    rads were over I had three treatments of Cisplatin along with a 4 day pump of 5FU.  Cisplatin caused some nausea, but only for 4 or 5 days every three weeks, and it was controlled by the meds.  5FU thinned my hair, but it most certainly didn't all fall out (I did lose all my eyelashes which grew back in after treatment). 

    I am curious about the Hydroxyurea, tho.   The only chemo's I've heard being used for oral cancer are Cisplatin, Taxol, Carboplatin, Erbitux, and 5FU.....of course, I've only been on these boards for a couple of years, and this is the first time I've ever heard of it, so I had to look it up.  What I'm seeing is that it used for leukemia, sickle cell, AIDS.....all cancers or disorders that have something to do with the blood and or bone marrow.   It is a drug used in myeloproliferative disorders (so I looked that up, too...."The myeloproliferative neoplasms (MPNs), previously myeloproliferative diseases (MPDs), are a group of diseases of the bone marrow in which excess cells are produced. ").

    So my question is....and one I think you should ask....is what is the justification of using Hyfroxyurea, and not Cisplatin or Carboplatin or Erbitux?   You have every right to know what their thinking is on this.....

    p   

    Thank you

     

    thank you for your help on this. I will ask the doctor about this choice. 

     

    BM

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Chemo Drugs

    Hydroxyurea with concomitant radiotherapy for locally advanced head and neck cancer.



    Abstract

    Hydroxyurea is an active single agent in squamous cell cancer of the head and neck. It has been used clinically, most frequently as a radiation-enhancing agent with concomitant radiotherapy. Pilot trials testing hydroxyurea in this setting reported encouraging results. Two randomized trials have been conducted with inconclusive results, possibly relating to study cohort size and short period of follow-up. More recently, hydroxyurea has been investigated with 5-fluorouracil and concomitant radiotherapy. A sound theoretic rationale can be made for this approach and data derived from a phase I/II study are presented. These support the further investigation of this regimen.


  • Bunnymom
    Bunnymom Member Posts: 212 Member
    Ladylacy said:

    Chemo Drugs

    Hydroxyurea with concomitant radiotherapy for locally advanced head and neck cancer.



    Abstract

    Hydroxyurea is an active single agent in squamous cell cancer of the head and neck. It has been used clinically, most frequently as a radiation-enhancing agent with concomitant radiotherapy. Pilot trials testing hydroxyurea in this setting reported encouraging results. Two randomized trials have been conducted with inconclusive results, possibly relating to study cohort size and short period of follow-up. More recently, hydroxyurea has been investigated with 5-fluorouracil and concomitant radiotherapy. A sound theoretic rationale can be made for this approach and data derived from a phase I/II study are presented. These support the further investigation of this regimen.


    Thank you

    yes I read this after I posted. Perhaps the information might be helpful for others as well. Thank you for taking the time to research

    bm

  • donfoo
    donfoo Member Posts: 1,771 Member
    Guzzle said:

    Domperidone

    Only had one cisplatin thus far and was prescribed the above which I have renamed "Domperignon". I was put on saline for 4 hoursbefore and after. Never had any nausea. I go again Monday so fingers crossed. G.

    you pretty sick

    which I have renamed "Domperignon"

    All I can say is your taste buds are very messed even though you think not. Anyone who equates chemo drugs to some bubbly needs their head examined soon. LOL glad you hanging in there bud!

  • donfoo
    donfoo Member Posts: 1,771 Member
    Bunnymom said:

    Thank you

    yes I read this after I posted. Perhaps the information might be helpful for others as well. Thank you for taking the time to research

    bm

    ask some questions

    Hi,

    A sound theoretic rationale can be made for this approach and data derived from a phase I/II study are presented. These support the further investigation of this regimen.

    I did not do any research on this but the way this is worded it sounds like it may not even reached a stage 3 clinical trial. Do check this out as if this is the case, one would have to classify this protocol as "experimental".  I've not been here all that long either but can not recall a single use of this stuff.

  • catfish_58
    catfish_58 Member Posts: 138 Member
    Cisplatin

    Had 7 Cisplatin treatments once a week,Had steroids pumped in too,Did not lose my hair but was nausea all the time,had thrush seemed like always,Had to take Nystan constantly,had medicine for being nausea too,became dehydrated once was feeling bad and wasn't paying attention to drinking or eating anything just wanted to sleep,tired quite a bit too,Can't think of anymore right now tho.

  • JP1965
    JP1965 Member Posts: 1
    ERBITUX side effects after Cisplatin side effects too damaging

    I'm devastated at this point with my cancer treatment.  Stage IV, head/neck cancer - squamous cell carcinoma.  I am a 49 yr old woman, which this type of cancer is rare for me.  treatment immediately began with surgery to remove tonsils and several biopsies plus extremely invasive biopsy to large lymphnode tumor on left side of neck; also to find primary.  No such luck.  Radiation has been ongoing monday throught friday for the last 3.5 wks, 1 week out due to cisplatin/radiation poisoning and now the RAD machines have been down last 2 days.  Med oncologist is insisting on stopping at my last dose of cisplatin due to hearing loss which is possibly reversible and some painful neuropathy in right foot.  Now she is switching me to Erbitux and after reading side effects from this one, I'm terrified and more than a little upset.  Isn't there anything other than these two that I coud possibly try?  I had only one dose left of the cisplatin to go...so disappointed :(  Any advice or helpful thoughts would be so greatly appreciated, I am at my breaking point...

    Thank you,

    Jen

  • MrsBD
    MrsBD Member Posts: 615 Member
    JP1965 said:

    ERBITUX side effects after Cisplatin side effects too damaging

    I'm devastated at this point with my cancer treatment.  Stage IV, head/neck cancer - squamous cell carcinoma.  I am a 49 yr old woman, which this type of cancer is rare for me.  treatment immediately began with surgery to remove tonsils and several biopsies plus extremely invasive biopsy to large lymphnode tumor on left side of neck; also to find primary.  No such luck.  Radiation has been ongoing monday throught friday for the last 3.5 wks, 1 week out due to cisplatin/radiation poisoning and now the RAD machines have been down last 2 days.  Med oncologist is insisting on stopping at my last dose of cisplatin due to hearing loss which is possibly reversible and some painful neuropathy in right foot.  Now she is switching me to Erbitux and after reading side effects from this one, I'm terrified and more than a little upset.  Isn't there anything other than these two that I coud possibly try?  I had only one dose left of the cisplatin to go...so disappointed :(  Any advice or helpful thoughts would be so greatly appreciated, I am at my breaking point...

    Thank you,

    Jen

    Erbitux

    The side effects of Erbitux are manageable. I have been out of treatment for six months and feeling great. I had 8 doses and experienced the acne-like rash on my head and face. My doctor gave me an oral antibiotic and I used an oatmeal/water solution to dab on the itchy ones. I looked pretty awful for a while, but it cleared up shortly after treatment ended and I have no scars. There was slight cracking on my fingertips, but keeping my hands hydrated with lotion helped a lot. My eyelashes grew, but went back to normal. The effects of radiation were much harder to deal with than those from Erbitux. I think the severity of symptoms depends on how long one is on the drug. Some cancers require a much longer length of time to treat. Don't be afraid of the side effects. Be assured you can ask questions here and get lots of helpful tips to help you through your tough times.

  • MGC
    MGC Member Posts: 72 Member
    MrsBD said:

    Erbitux

    The side effects of Erbitux are manageable. I have been out of treatment for six months and feeling great. I had 8 doses and experienced the acne-like rash on my head and face. My doctor gave me an oral antibiotic and I used an oatmeal/water solution to dab on the itchy ones. I looked pretty awful for a while, but it cleared up shortly after treatment ended and I have no scars. There was slight cracking on my fingertips, but keeping my hands hydrated with lotion helped a lot. My eyelashes grew, but went back to normal. The effects of radiation were much harder to deal with than those from Erbitux. I think the severity of symptoms depends on how long one is on the drug. Some cancers require a much longer length of time to treat. Don't be afraid of the side effects. Be assured you can ask questions here and get lots of helpful tips to help you through your tough times.

    Cisplatin

     

    Jen, Sorry that you have to be here but happy you found this place.

     

       I was 49 when diagnosed with the same. Stage IV SCC on tonsil and BOT HPV+.

     

    They had 19 radiation machines where i did my treatment so a breakdown was a not a problem. It should be everyone’s consideration though. I only received 2 of the 3 planned cisplatin chemo treatments because of the hearing damage and it is not reversible but it may get better. I have not seen it with anyone but I am not a pessimist either. I used to have very acute hearing and now it just sucks. I also have terrible tinnitus. Just collateral damage though. I am here 5 years later and feel great. Never had surgery either. Just chemo and rads and had several lymph nodes involved as well.

     

    I do not know much about erbitux but I think the side effects are more manageable.

     

    There is some great info here and some great people as well.

     

    Good luck.

     

    Take care

     

     

    Maark