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#37551 06-22-2004 05:39 AM
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sweety Offline OP
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Hi

I was wondering if there is any difference in taking Chemo orally rather than intravenously?
The reason I ask this is because I am facing Chemo on top of Radiation which I have already been a week into.
The doc has said that I am quite lucky in that I only need a low dosage. Does that mean the side effects won't be as bad?
However I am in such a daze with eveything that has been said today that I cannot think straight. My memoer is shot to pieces at the moment.
Is there anyway that i can become more pro cative in what is happening to me or in your experience is it a case of do as the doc says?

Thankyou in advance for any tips or advice,
Sweety


Stage 1vb Metastatic Cervical Cancer.
Metastatic squamous neck cancer.
Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.

WHERE THERE'S LIFE THERE'S HOPE.
#37552 06-22-2004 05:52 AM
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Hey Sweety,
My husband had chemo intravenously, but not a very high dose. He had 7 weeks of carboplatin/Taxol. It took about 3 hrs. once a week for the chemo. Side effects from chemo were not too bad...he had more from the rad. Just try and make sure you are at a cancer center for your treatments. We didn't get there until his chemo/rad treatments and we wish we had been there from the start for his surgeries, etc.

God bless,
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
#37553 06-22-2004 05:55 AM
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I pray it goes well Sweety. I'm glad to hear it is a low dose.


Kimberly -friend to paitent
mom to 3 boys
#37554 06-22-2004 07:18 AM
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sweety Offline OP
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Thankyou to both of you for your replies.

Domer I was just wondering what side effects your husband had. I am incredibly frightened of the side effects especially that I may lose my hair. I am not sure how I am going to cope. I hope this does not sound egotistical of me because I know that what lies ahead is for my benefit but even so I am get very upset thinking about that prospect.

Sweety.


Stage 1vb Metastatic Cervical Cancer.
Metastatic squamous neck cancer.
Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.

WHERE THERE'S LIFE THERE'S HOPE.
#37555 06-22-2004 07:43 AM
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Sweety, I lost my hair and look at it as a very small price to pay for being here to tell you about it. I got a nice wig and wore it with hats, as with a bowling ball for a head, any wind can send your hair flying (grin). I also bought quite a few colorful scarves and wore them pirate style. The American Cancer Society has a TLC catalog where they sell very reasonably priced hats and wigs and other coverups. You can see the products online here: http://www.tlccatalog.org/

I understand that the American Cancer Society also supplies wigs at no cost, but I have no experience with that. You might give them a call, though.

I remember feeling just as you do, but it is not nearly as bad as I feared. Remember, Sweety, unlike parts of us that are surgically removed or altered, our hair will grow back!

You will do fine.

#37556 06-22-2004 08:22 AM
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Sweety,
my husband also had chemo along with his radiation. His hair thinned out quite a bit, but he never completely lost it. I think I lost almost as much hair as he did just from the stress and worry!

Best,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#37557 06-22-2004 09:33 AM
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It's very understandable why you're in a daze. My head was swimming as well - I even passed out when I got the intitial Dx. Bring a tape recorder or a good note taker with you to all of your appointments. Many important decisions have to be made early on. If you desire to be proactive you need to know all of your options.
It is vital that you be your own advocate.

Since I shave my head anyway I don't know what effect the chemo would have had on it. My beard fell out in places and the radiation took out the hair follicles on my neck so I don't have to shave there anymore.

The main thing is to stay alive and not have a recurrence. Hair will grow back, if you even lose it at all.

You will cope just like the rest of us - one day at a time (sometimes one breath at a time). Future tripping will drive you crazy -you don't own it - let it go.

It'll get better once treatment is started - this is the most difficult time right know - when you are in shock, fear and still sorting things out.

It's a good idea to have an idea of what can happen to you so that you can prepare in advance. There are some very good books like "Living Well With Cancer" and others on the OCF booklist that are like a "user manual" for people (and caregivers as well) going through treatment. We are always here to help also.

It's not going to be any picnic but it it is quite survivable. Roll with it, get into the fight. A positive attitude will carry you a long way.

Antianxiety medications are very helpful as well.

You really haven't described your cancer, we would need to know the type, location and staging to be able to share more of our experience, strength and hope.

It should be said also that it is always more advantageous and safer to go to a comprehensive cancer center for diagnosis and treatment, if you are not already. Oral cancers are very dangerous and you need the best doctors and institutions that you can get.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#37558 06-22-2004 10:02 AM
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Sweety: Welcome. I noticed this was only your second posting, so welcome. My chemo was intravenious, not orally. Didn't even know oral was available. What Gary said is right, though, what matters is surviving the disease. Hair loss, vomiting, all of the side effects will go away. As long as the disease goes away, all will be well. Confusion and lack of memory with doctors is also very common. Take someone with you to get it right or you'll end up doing the wrong things to fight the disease. I found that the radiation was a lot worse than the chemo, also. So hang in there as treatment progresses. Hopefully, you are at a cancer center. It is important to get the best, most up to date treatments and cancer centers specialize in this disease. I depended on my caregiver (wife) to get all of this straight. I didn't even want to know what was coming. I would deal with it as it came and not have to anticipate what was coming. Thank God for my wife. She took care of me and kept me on the right path. Do you have a caregiver? If not, perhaps a relative can help. I certainly needed it. As Gary also mentioned, we can be more helpful if you let us know what the details of your cancer are. Stage, location, etc. Don't sweat the small stuff is what my Dad taught me, and losing hair or getting sick to your stomach is small compared to some things. Hang in there.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#37559 06-22-2004 03:23 PM
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Sweety,
Dan's hair thinned a bit, but he did not lose his hair. His chemo dose was low also.

Take care, prayers are going up for you!
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
#37560 06-22-2004 03:39 PM
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Hi Sweety,

I just started the same treatment you are having. Last Monday was my first treatment with Taxol & Carboplatin.
I was at first given an anti-nausa chemical in the vein. They than took about two hours to deliver the cocktail. It did not burn going in plus I felt no side effects at all. They warned be I might get tired easy but today my son and I started landscapaing our new home.I worked all day.

The nurse told me you may or not lose your hair, it might just get thin for awhile.

I hope all goes well with your treatment. I pray you recover completely.

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#37561 06-23-2004 03:40 AM
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Sweety,

Welcome to the neighborhood! I am sorry you are having to go through all this and unfortunately it will get a bit rougher before it gets better.

Do you have anybody with you through this? I believe, personally, that this is essential. I could not have done this alone or I would not have chosen to do it alone. My wife took charge and made it much more tolerable...for me anyway. You would have to ask her for the real scoop!

You will get very confused mentally with all you are going through and you might want to get out a notebook or piece of paper and start writing every question down that you have. The treatment will hamper your ability to reason, remember and deal with things as it intensifies.

You are probably too far into the treatment to question if it is the best approach but you can still pester the doctors to answer your questions. That is part of their job, too.

Many times, the chemo is used to help the effectiveness of the radiation. I do not know your specifics, though, and this is my experience.

My hair thinned out and I looked like a (giant) baby bird. When I went by the mirror sometimes I didn't recognize myself. I wore a bandana over it to protect my head from the sun. Now it is very thick and darker than usual, although curly in the back for the first time in life. It took about 7-8 months to fill in but I hardly noticed it.

I hope this helps. If the doctor tells you are lucky to receive a low dose of chemo, ask him why this is so. When he tells you anything that you are not 100% clear or fully understand, ask him until you are very comfortable. He will most likely assume that if you do not ask, you fully understand. Look out for yourself as nobody else will have your interests at heart like you do!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#37562 06-30-2004 03:40 AM
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sweety Offline OP
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Thankyou everyone for your advice and support. Sorry I have not been around but am feeling terrible at the moment.

warmest thoughts

Sweety


Stage 1vb Metastatic Cervical Cancer.
Metastatic squamous neck cancer.
Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.

WHERE THERE'S LIFE THERE'S HOPE.
#37563 06-30-2004 05:43 AM
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Sweety, if you're getting concurrent chemo/rad, then that is a rough road indeed. When taken together, the chemo has a tendency to increase the side effects of the radiation and vice-versa. The good news is the chemo also sensitizes the cancer cells to the radiation, which makes the radiation more effective in killing the cancer.

On your next doctor's appointment, grab your hubby/boyfriend/best-friend/what-ever and take them with you. They will think of questions that you haven't thought of and it will make them feel better to be part of the fight with you. My best friend came with me to every chemo treatment and most of the clinics. His clear thinking helped him to come up with questions that I hadn't thought of and his advocacy during treatment was very helpful. He told me later that it helped him better deal with my cancer.

Hang in there!

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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