I think I am exhausted from everything...sitting, waiting, the IV fluids, 4 bags of them-2 before and 2 after the CISplatin. The radiation mask was so tight I looked like a fish trying to push myself through to get out, not uncomfortable though. The total radiation time for the remaining appointments will be 15 minutes and done.
I found out yesterday that the tumor is HPV16 positive. I also found out that my blood work reveals I have some kidney disease hence the need for additional fluids. I thought I was doing so well but surprise...not true! I do hope the nausea is staved off by the meds. The nurse, Katelyn, asked if I had morning sickness with my pregnancies and I never did. She said there have been studies to show if you had morning sickness you would be more likely to have nausea with the chemo. We shall see if this holds water.
My husband and mother were with me throughout the day. I was able to eat, play scrabble on my new Kindle, read and visit a little. The people who were around me all needed cheering up so I made sure we shared a kind word or two.
Tomorrow back for the radiation. I have a printed schedule and it is filled up nicely. I hope I can keep up the pace and the attitude. The attitude definitely got me through this first day.
Seems a lot for a sick person;)Nona

Well at least that dreaded 1st day is over.

I didn't have any nausea my 1st bag but the 2nd and 3rd....well that's another story!

Maybe your HPV knew mine?

Anything is possible under these circumstances.
I think of the line, "...regrets I have a few." But, I am looking to a good ending despite those choices.

As for the nausea, it is rearing its ugly head this morning and now the work to force food into my mouth so I don't lose the weight and keep everything in balance.

Thanks for your reply to my post.
Have a good one.
NonaChris

What anti nausea meds did they give you?

Let them know that what they did give hasn't worked. Maybe something else will. I had a horrible time controlling my nausea once it kicked in after the 2nd bag but some others here have had better luck. Remember "we all can react differently to the same....", you will hear that a lot on this site.

I never thought of OC as being sick. To me it is having a disease. LOL that is a more relaxing word. I was lucky and have as yet never had a reaction to any of the treatments. As David just said, we all are different and react this way too. Good luck and welcome to our world of love and friendship.

Hi NonaChris. Yeah - treatments have started! I remember waiting for John's treatments to start and feeling like we were in a holding pattern. At least now you can start marking the completed days off on a calendar - you are fighting the fight! John had weekly Cisplatin and had a terrible time with nausea all through and after treatments. It was a combination of the chemo and the mucus. He took both Compazine and Zofran, Compazine alone did nothing. Good luck and hang in there!

Nonachris,

Read this "Cisplatin Manual" as I now call it that Don, one of our most knowledgeable posters, posted:

WEEKLY CISPLATIN & RADIOTHERAPY
1. Chemo-radiotherapy for SCC Head and Neck Cancer
2. Treatment of advanced Nasopharyngeal Cancer, following 2 � 3 cycles of neo-adjuvant chemotherapy

NB. This protocol only for use in patients with good renal function and able to drink oral fluids

Drugs/Dosage: Starting on Day 1 of radiotherapy:
Cisplatin 40mg/m2 IV once weekly for 6 � 7 weeks
Radiotherapy: 2Gy/fraction, given daily on weekdays only over 6��7 weeks, to a total of 66-70Gy
RT must commence within 1 hour of the end of cisplatin infusion
Administration: 1 litre 0.9% Sodium Chloride + 20mmol KCl + 10mmol MgS04 IV over 2 hours
Mannitol 20% 100 ml IV over 15 minutes
Cisplatin in 1 litre 0.9% Sodium Chloride IV over 2 hours
1 litre 0.9% Sodium Chloride + 20mmol KCl + 10mmol MgS04 IV over 2 hours
500ml 0.9% Sodium Chloride IV or 500ml - 1 litre water orally over 1 hour
Frequency: one course only, consisting of 6 to 7 doses of concurrent weekly cisplatin
Main Toxicities: myelosuppression; alopecia (mild); neuropathy / ototoxicity;
nephrotoxicity; ovarian failure/infertility
Anti-emetics: Cisplatin - highly emetogenic (as poorly controlled nausea is a difficult problem in
this patient group, prescribe 2nd line anti-emetics for delayed nausea routinely with
Cycle 1)
Regular FBC once weekly pre-chemotherapy
Investigations: (N.B. see Haem Toxicity section for Hb requirements)
U&Es & LFTs once weekly pre-chemotherapy
Mg2+ and Ca2+ once weekly pre-chemotherapy
EDTA Prior to 1st cycle
Comments: If patient has any baseline hearing problems, carboplatin AUC 2 should be
substituted for cisplatin, administered as discussed below under Renal Impairment.
For patients on Cycle 1 whose EDTA is not yet available, Cockcroft & Gault may
be used to predict GFR. Cisplatin dose should be adjusted if necessary once EDTA
available. EDTA should only be repeated if the result is borderline at the start of
treatment or if there is a 30% change in serum creatinine.
Check electrolytes � additional supplementation of magnesium, calcium and
potassium may be required.
Weight should be recorded prior to and at the end of cisplatin treatment, and a strict
fluid balance chart should be maintained. An average urine output of at least
100ml/hr must be maintained throughout treatment, and cisplatin infusion should not
be commenced unless this urine output is achieved. If the urine output is inadequate,
the patient should be assessed and urine output increased by administering 500ml
Sodium Chloride 0.9% IV +/- furosemide 20 � 40mg. Furosemide 20 � 40mg po
may also be given if there is a positive fluid balance of 1.5 litres, a weight gain of
1.5kg or symptoms of fluid overload. The patient should be asked to drink 2 litres of
fluid in the 24hrs following treatment, and to contact the hospital if this is
impossible because of problems e.g. nausea and vomiting.
Dose Modifications
Haematological Neutrophils < 1.5 x 109/l Delay cisplatin for 1 week (RT to continue).
Toxicity: or Repeat count and, if within normal
Platelets < 100 x 109/l parameters, resume treatment at full dose.
Haemoglobin (Hb) needs to be maintained above 12g/dl throughout this treatment1.
If the Hb falls below this level, a blood transfusion needs to be arranged (treatment
may continue).
Renal Impairment: NB. Cisplatin is both eliminated primarily (> 90%) in the urine and is itself
nephrotoxic.
GFR (ml/min) Cisplatin Dose
>60 Give 100% dose
45 � 59 Give 75% dose
20 - 44 Cisplatin contra-indicated
Carboplatin AUC 2*, administered in 250ml 5%
Glucose over 30 minutes, may be substituted. It may
be given according to this protocol, with however no
requirement for pre- or post-hydration, nor fluid
balance/urine monitoring
< 20 Carboplatin contraindicated
Formula:
Dose = Target AUC x (25 + GFR)
Neurotoxicity: Grade 2: Reduce cisplatin dose to 30mg/m2
Grade 3 - 4: Discontinue cisplatin

References:
Al-Sarraf, M. et al, JCO (1998), Vol 16 (4): 1310 � 1317

Bachaud, J et al; International Journal Radiation Oncology Biology Physics (1996);
36 (5): 999 - 1004

Prosnitz, RG et al; Int J Radiat Oncol Biol Phys 2005; 61: 1087 � 1095
_________

Ah, that would explain it - morning sickness! So that's why I puked my guts out so much when I was on Cisplatin (they even had to eliminate the third and final Tx ;-).

The anti-emetics are all fine and good but if you read the fine print, they are effective about 60% of the time. Some need to be rotated (like Zofran) to maintain effectiveness. As a last resort, if you can't keep anything down, there are always Compazine suppositories. Cisplatin does on number on the GI tract, in general, so a medical grade antacid should be part of your meds (like Famatodine, AKA Pepcid AC)

I have to question the previous post about "...oral fluids...", I am sure that fluids administered via PEG (or IV for that matter) count as well (water in food also counts).

It is absolutely vital to stay hydrated during treatment (especially if you have renal impairment). Not to fear - if you don't, you'll end up in the ER (like I did - twice). Tip - If you need to be rehydrated, by IV, go to the infusion clinic instead - it's much faster and comfortable. If you are vomiting you will lose a lot of fluid in a short time period and it must be replaced.

We all respond differently to Tx, some better than others - I was not one of them. You'll have fair days and horrific days. Cisplatin and radiation are not a treatment for wimps.

I wouldn't characterize it as not doing well as your experience is somewhat typical. You probably weren't properly prepared by your doctors.

About the mask - it will loosen up as you lose weight.

At least it killed the disease so it was ultimately worth it.

Keep your eye on the prize...

The nausea I think was about the worst part of it for me. And I didn't even have chemo! Who knew that radiation alone could do that? Not me. I was nauseated 24 hours a day for three solid months after the end of RT and nothing seemed to help. Until finally they tried Compazine and that did the trick. Or maybe it was just time for it to go away on its own. At any event, I wish you well, NonaChris, and hope you sail through everything!

David2

Thanks for the very thoughtful replies.
I have to just jump in so I can tackle some of the concerns.

I have taken a rotation of anti-nausea including IV options when I am at the hospital. As for at home, Zofran and Compazine. I have made it through the first full hit. I had a good Sunday and yesterday was pretty comfortable.
The radiation is showing some changes in my throat with an increased thickness of the saliva, and mucous. I am still doing my best to eat although last week it was a struggle on a couple of afternoons.
The poster or chart for cisplatin has a lot that is familiar but also I am not a med. person so I would need to take some time to digest the information.
I wanted to know has anyone had the "ringing in the ears" side effect from the chemo. I understand it could be permanent. It started last evening overnight and well it could drive someone crazy.
How about headaches...anyone advice, I am taking tylenol and feel that is being overdone.
Thanks, NC

I haven't vomited but I have had some dry heaves. I am thinking it is more to do with radiation.
Sorry about the morning sickness...I am sure everyone had a chuckle on that one.
NC

I can't speak to the headache but your doctor should be notified IMMEDIATELY of any changes, in hearing, during Cisplatin Tx. Cisplatin can cause permananet deafness although this is very rare.

They should also have performed a baseline audiology test prior to treatment and periodic ones during treatment.

It could be the radiation but I would put my money on the chemo. Constipation from narcotics can also cause nausea. For that matter fear and anxiety can cause nausea.

It may be VERY RARE to cause permanent deafness but it also causes permanent damage along the way towards deafness, so even if you don't end up deaf believe me the damage Cis causes can affect your quality of hearing for the rest of your life. I speak from experience.

Has anyone suggested Emends for the nausea?

So for the rest of my life I will experience hearing loss?
I did have emed for the first three days all orally.
NC

You are right...it would be the chemo. I talked with the doctors today and at this point it is just about the chemo. I guess I am a bit naive at this point. I don't have all the downsides and side effects but by the end of my treatment...I guess I will need to wait and see.
NC