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 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

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

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 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

 

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 said:

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   

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.

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

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.

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 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.

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