#40113 07-03-2006 02:39 PM | Joined: Jun 2006 Posts: 10 Member | OP Member Joined: Jun 2006 Posts: 10 | My Dad is getting ready to begin treatment for Stage IVa cancer at the base of his tongue and in his lymph nodes. He has been told he will have 5 days of 24hr a day chemo along with radiation, then radiation for 4 more weeks and the 24hr/5day chemo radiation for another week. My dad has been advised to also take Protocel. It is an antioxidant supplement recommended by a bio-chemist. The bio-chemist used this to treat his brother who had stage IV lung cancer which went into remission.
Dad is understandably worried about the cisplatin. He's read all about the side effects. If anyone has any experience with this please let us know. We've also been looking at carboplatin, which seems to have as much success with less side effects. | | |
#40114 07-03-2006 03:01 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Dear Scott, answering this question is kinda like playing the "shell game". My husband's chemo Doc, after much questioning from me, said that carboplatin and cisplatin show pretty much the same results and carboplatin tends to have fewer side effects. Keep in mind-this is one Doc's opinion. John has been very lucky so far with no major bouts of nausea on the carbo\taxol combination and he has completed 2 cycles. The major side effects for him are hair loss, blood pressure all over the place and 0 energy. Can you tell us more about the Protocel- that sounds interesting and I have never heard of it before. Good Luck to your Dad! Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#40115 07-03-2006 04:26 PM | Joined: Jun 2006 Posts: 10 Member | OP Member Joined: Jun 2006 Posts: 10 | Amy,
I thanks for the info. I just signed my Dad up for the forum so that he can use this resource to help alleviate some of his fears. As far as what your doctor said about the carboplatin, that seems to be a fairly common opinion regarding the cisplatin and carboplatin. I've told my dad he needs to talk to his doctor and tell him how he feels and let him know what he wants.
Scott | | |
#40116 07-03-2006 05:51 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Scott, I was begun on cisplatin, but developed hearing issues and was quickly switched to carboplatin. My hearing is fine, and with the switch to carboplatin, I no longer had to measure urine output, which was a nuisance. I received the carboplatin/taxol mix, which left me temporarily bald, but as a T4N2M0 patient 4 years ago, I think it worked very well. The only other side effect was what is called "chemo brain" which basically means fuzzy, slow thinking for a few weeks. The upside of that is when it goes away, the patient feels really smart (grin). | | |
#40117 07-04-2006 01:30 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Scott --
When my husband Barry was treated at John Hopkins (where I hope they know what they are doing!) his medical oncologist did not want to give him cisplatin because he (Barry) already had high-end hearing loss from childhood ear infections, and further loss would compromise his ornithological work. The MO first considered the carbo/taxol combination but Barry had concerns about peripheral neuropathy from the Taxol (a fairly common but not universal side effect). His MO, who is expert on chemoradiation and organ preservation, frankly said that there was little good data showing significant benefit from the taxol addition and as far as she was concerned, he didn't need to take it. So he didn't. He had 7 weekly carboplatin treatments, each low dose. He was getting 33x radiation at same time (tomo-Therapy IMRT), plus amifostine. No surgery other than pre-treatment tonsillectomy (his primary tumor).
The chemotheray was, in Barry's words, a "non-event" -- he was given Anzemet by IV beforehand and took a Zofran the next day and had no probems. The amifostine was much more difficult to handle!
Although Hopkins does, I believe, prefer to give the carbo/taxol combo (and still uses cisplatin for some patients) we were told by our onc nurse that more patients are getting just carbo as they are having such good results with this in combo with radiation. Some are also getting Eribitux -- you should ask the doctor about this. It was not available when Barry started treatment.
Barry finished treatment at end of September and recovered very quickly, and now -- except for need to regain some more weight -- he is pretty much back to normal. All tests (including two PET/CT scans) have shown no sign of cancer, so he is considered to have had a complete clinical response. Of course he will need to be monitored for years but so far it looks good.
This is just to say that carboplatin (with or without Taxol) is a good alternative and can result in a successful treatment with fewer lingering side effects.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#40118 07-04-2006 03:04 AM | Joined: Jun 2006 Posts: 10 Member | OP Member Joined: Jun 2006 Posts: 10 | Joanna and Gail,
Thank you both for responding. I will share what you have said with my Dad. I'm sure hearing about the success you've had with carboplatin, it will encourage him.
Scott | | |
#40119 07-04-2006 05:55 AM | Joined: Jul 2006 Posts: 2 Member | Member Joined: Jul 2006 Posts: 2 | | | |
#40120 07-04-2006 06:05 AM | Joined: Jun 2006 Posts: 10 Member | OP Member Joined: Jun 2006 Posts: 10 | | | |
#40121 07-04-2006 06:35 AM | Joined: Jul 2006 Posts: 2 Member | Member Joined: Jul 2006 Posts: 2 | Hi Again
I'm kind of new to this computer and forum, so bear with me. My son scott has been on here recently explaining my Dx. I have a squamous cell on the base of my tongue. Stage IV T2N2B. I am to start treatment in 2 wks. The first wk with chemo/rad using cisplatin the 1st day and then 5fu the other days. After reading about cisplatin's side effects, I'm real concerned about using it verus carboplatin. I am also along with the chemo/rad, going to take a supplement called protocell that was recommened by a bio-chemist friend. It is a very strong anti-oxidant. I read about this product in a book called " Out Smart You Cancer". There is a web site by the same name. Has anyone had experience with supplements and how do you feel about cisplatin? | | |
#40122 07-04-2006 09:08 AM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | Ron, you didn't say whether you were being treated at a Comprehensive Cancer Center, but based on my brief research at Quackwatch.com, I suspect not. The following was cut and pasted from quackwatch:
"CanCell -- originally called Entelev and recently renamed Cantron and Protocel -- is a liquid claimed to cure cancer by "lowering the voltage of the cell structure by about 20%," causing cancer cells to "digest" and be replaced with normal cells. Accompanying directions have warned that bottles of CanCell should not be allowed to touch each other or be placed near any electrical appliance or outlet. CanCell has also been promoted for the treatment of AIDS, amyotrophic lateral sclerosis, multiple sclerosis, Alzheimer's disease, "extreme cases of emphysema and diabetes," and several other diseases. In 1989, the FDA reported that CanCell contained inositol, nitric acid, sodium sulfite, potassium hydroxide, sulfuric acid, and catechol. Subsequently, its promoters claimed to be modifying the formulation to make it more effective . They have also claimed that CanCell can't be analyzed because it varies with atmospheric vibrations and keeps changing its energy . Laboratory tests conducted between 1978 and 1991 by the NCI found no evidence that CanCell was effective against cancer. The FDA has obtained an injunction forbidding its distribution to patients."
PLEASE make sure your oncologist is aware of any "supplements" you are considering taking during chemo/rad. At least on the surface, this one doesn't sound like something that will be helpful.
I'm sure that other more knowledgable and eloquent members will chime in here, as the vultures who offer miracle cures usually bring out an emotional response. I know I'm fuming here, but will try to maintain my composure.
On the subject of chemo, I had an induction protocol of Carboplatin and Taxol, and had a complete response. Now, two plus years out from treatment, I still have slight neuropathy in my feet. I have not noticed any hearing effects.
Again, I can't emphasize enough that you communicate with your doctors about any supplements you are taking during Rad/Chemo.
Best wishes for success in your upcoming treatments.
Good Health,
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | |
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