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#112192 02-11-2010 08:00 AM
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Mike's first induction chemo was done on Thursday, Jan 28th. He spent all day at the CCC. First they gave him iv fluids for 3 hours, an iv anti-nausea med and a steroid, then taxophere, then cisplatin, then 3 more hours of fluids and hooked him up to a cartridge with 5fu in it. This had a fanny pack type bag he carried around all weekend. It ran for 96 hours, and then he returned it to the CCC.
He went to work on Friday, but starting on Saturday he got really tired, and didn't return to work until the following Thursday. He developed a couple of mouth sores, a few sores on his face/neck, indigestion, and thrush. The thrush was in the form of white patch in his mouth and red raised patches in his armpits. Two more prescriptions for the thrush and indigestion and he feels pretty normal now, although he did suddenly get weak and tired yesterday.
Some things tasted terrible, and he couldn't eat sweet stuff for about a week because it hurt his mouth. He continued to drink a lot. I mixed up some baking soda/salt water for gargling and that seemed to help some.

One "funny" side effect he got that he still has is what we call his "crop circles". On the side of his abdomen he has 3 perfectly round red circles about the size of a silver dollar. They don't itch, and are slightly raised but almost look like he laid on something and it left an imprint. When he went in for his blood work, which was all good last Thursday - they pulled everyone in to look at them and nobody has ever seen anything like it. Anyone else have any strange things like this?

He gets his second IC on the 18th - then fitted with the mask for radiation on the 23rd. Then he will start radiation and either 1x week or 3 doses of cisplatin around the 8th of March.

For anyone who has gone through similar treatment, was the second IC therapy worse, or did you have about the same reactions as the first round? I know everyone is different but he feels like he really didn't handle the first round well (he says some of the posts here made it sound like the ic didn't affect them, but I told him that may be compared to what is coming with the combined rad/chemo).

Just wanted to look for suggestions to try and make this second round better, and share with others who may be getting ready to go through IC.

Blessings,
Shelly


Caregiver/wife to Mike, age 48 used chewing tobacco - quit
SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+
L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck
Siteman Cancer Center
Port in Jan 27, Peg in Mar 3
IC 28 Jan & 18 Feb - TPF
CRT Cisplatin x3 start March 10th
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Hi Shelly. The IC treatments are cumulative and the effects get progressively worse. That being said, the side effects that got worse for me was the fatigue and dehydration. My nausea was very well controlled and I had no trouble eating.

The important thing is to communicate with the chemo nurses so they can adjust and add as necessary.


Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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Hydration, hydration, hydration. Keep flushing those chemicals out of his body.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
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i agree with the above comments. andy went thru 3 rounds of chemo, took home a "baby". each round was harder especially with fatigue. he never lost his appetite though...ate like a horse.
he did develope a "metalic" taste in his mouth. the MO suggested using plastic silverware, this seemed to help a little.
he stopped working during his second round due to the fatigue. couldnt keep up with his demanding 65+ hr/wk job.
never heard of the crop circles...lol!
but the fatigue during chemo is NOTHING compared to rad/chemo.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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Teresa,

I almost forgot about the plastic silverware. I had the same thing with the metal taste. I raided the picnic basket.

Shelly

I also got funny rashes away from the Ethyol injection site. They shot the Ethyol in the abdomen, arms and thighs but I would get these funny circular red spots just above my hip about where the Kidney's are. My Nurse called the RO over to look. They both wondered what the heck that was and the RO said to keep an eye on them, they stayed around for most of my treatment but never got bigger, Faded away at times, and did not bother me. We never did figure them out.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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I saw a movie once about those crop circles....SIGNS w/ Mel Gibson, maybe there's a connection?


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.
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Shelly,

Mike's regimen sounds like it's just like mine was. I guess I'm a little out of the ordinary - for me, it felt like the first round of Induction chemo was the worst. I developed a couple of side effects I wasn't prepared for (one was PAIN that started in my chest, then slowly moved down my GI tract - thought it might be a heart attack at first). A Prilosec/Previcid drug was prescribed (I didn't feel like it did a lot, but it did help). The GI pain stopped at the end of round 1, and didn't return - (I stopped taking the drug for that).

Mouth sores were more mild in round 1, but I think that's all that was easier for me.

Oh - no "crop circles" that I know of.

Keep trooping,

- Pam


44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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Just remember , this all could be worse, mouth sores and all.I'm past 2 years since the rad seed implants and my mouth has never quit hurting at all. In fact I have to force food because of mouth , neck and throat pain right now. I am forcing maybe too much food, but just incase it is something else, I want some weight that I can afford to lose. But I go on smiling and say I feel great for my family and friends.


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
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Thanks to everyone for your replies - I will have to get out some plastic ware for this next round and see if it helps. His crop circles are not due to Ethyol injections because he is not getting those, so we will have to see if they get worse after this next round or stay the same.

David - I know I saw that movie "Signs" but can't remember much about it or the ending - have been thinking about signing up for netflixs so might have to put that one on our wish list. The plot says: "A family living on a farm finds mysterious crop circles in their fields which suggests something more frightening to come." I am afraid the something more frightening to come is rad/chemo, but thanks to you all we are more educated and at least have a small clue, although I do not thing anyone can be "ready" for it.

EZJim - Your sense of humor on these boards make me laugh often. I don't think that I would be able to be as strong as you are - you are an inspiration and I pray things get better for you.

Blessings,
Shelly


Caregiver/wife to Mike, age 48 used chewing tobacco - quit
SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+
L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck
Siteman Cancer Center
Port in Jan 27, Peg in Mar 3
IC 28 Jan & 18 Feb - TPF
CRT Cisplatin x3 start March 10th
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Posts: 5,260
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Thank you Shelly for the boost. I need to be given an ego shot once in awhile such as now.


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
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Hi,

I am a 6 year survivor this week.

Things were looking bad then.

Life is back to normal in all respects now.

It will go fast and you will get on with your life.

Fight fight fight.

This too shall pass.

God bless.


Robert Hamilton


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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Shelly,
Thanks for bringing this up as I have just finished my first round of IC as well. All my symptoms are the same except for the crop circles--the mouth sores, thrush, extreme tiredness, acid reflux.

My best to Mike--I'm planning to try to work until after the third round but won't be surprised if I can't make it. My company has been great so far--hopefully it will last.


8/2006: SCC, right lateral tongue, well differentiated, superficially invasive. 10/2009: recurrence, rt lateral tongue, surgery, rt mod neck dissection. 2/2010: metastasized node under left mandible. 3/2010: Induction chemo 3 rounds, Cisplatin, Tax, 5-FU. Surg and rad to follow.
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Joy -
I hope you are doing well. Rest and hydrate. We did get a script for magic mouthwash and a refill on the thrush meds just in case before he started round 2 - needed the thrush meds but no mouth sores. I was expecting they would be worse. One small blessing in all this, I guess.

Mike found he would wake up feeling pretty darn good, and a few hours later would just 'crash'. I hope you are able to continue working as long as you want and that your company continues to support you.

One thing I don't think I've mentioned is that Mike is almost always COLD. He'll be fine, then suddenly gets chilled and then can't warm up, and the cold wears him down fast.

Am thinking about you hoping its going well!
Shelly




Caregiver/wife to Mike, age 48 used chewing tobacco - quit
SCC BOT T2N3M0 Diagnosed Dec 29, 09 HPV+
L ND Jan 7 removed 31 nodes, 6 positive Bilat mets neck
Siteman Cancer Center
Port in Jan 27, Peg in Mar 3
IC 28 Jan & 18 Feb - TPF
CRT Cisplatin x3 start March 10th
Joined: Feb 2010
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hi everyone, just been reading the notes and am in the same position as i started my treatment on Wednesday 3rd March 2010 . three days of rd ther and 1 full day with Cisplatin chemo. am resting and drinking lots of water today. coming to terms with all the meds, scripts etc . medication keeping the nausea at bay thank god. and have been given mouthwashes and stuff for thrush. such tiredness though on those three evenings i was in bed by 8 and 9 oclock but woke up feeling good at 7 am next morning. feel the cold too myself and cant bear even a draught. otherwise feeling ok and its great to read these posts and hope i can find my way round a bit better as time goes on... god bless Rose10

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It all takes time Rose. But it seems to pass quickly. LOL I wish the pain would pass too.


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: Sep 2009
Posts: 618
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Rose,

I have a small electric blanket that my wife got me. It is not the full sized one you get for a bed but is perfect for covering my legs and chest while I sit in my chair in the living room.

I am about 4 months out of treatment and don't use it much any more but it was a constant companion when I was being treated.

My son also liked getting me hot water bottles. Those help too. Anything to take the edge off the chill is nice.

Good luck on the rest of treatment.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jun 2007
Posts: 5,260
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The ladies at my church made me a quilt as they do for all cancer patients. I also stand in the shower and keep making it hotter by turning the cold down until the water burns a good bit, then I let the water spray on my neck and mouth one side at a time and keep changing from one side to the other. I don't know if it helps, but to me it takes some of the pain away for awhile.


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
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