| Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | 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
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | 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
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | 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!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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 _________
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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...
Last edited by Gary; 02-25-2011 08:27 AM.
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)
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | 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
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2011 Posts: 49 Likes: 1 | 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
63 years old Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11 Treatment start 2/22 CISplatin 2rnds, Rads:35 treatments July 12 doctors' deemed me cancer free-port out July 18. Non-smoker, was a light-drinker No drinking since diagnosis | | |
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