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#45942 09-09-2005 03:05 PM
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Michael, if you feel that you are lacking for company, I could send you our 3 small dogs for a visit, and our 2 grandkids who are presently living with us, plus I LOVE New York CITY so I could come too and cook[except I don't think people in NYC ever use their kitchens except to put in magazines] Besides, I'd love to meet Seth, Heather and your parents. 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

:
#45943 09-10-2005 04:51 AM
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Hey guys.....

Well..I finished the 2nd half of the 2nd chemo cycle last evening (Fri)...

I think I may have made a major error allowing the Drs to convince me to go forward... frown

Thurs night at around 2:am I started getting ringing in both ears, and it's only gotten worse since.

Last night I could hardly sleep with the ringing, and it woke me several times. Today it continues to get worse, and I don't know what to do.

When I mentioned it Fri AM to the Dr he said, "Well...You knew the risks".

I can't stand this incessent(sp?) ringing...It's driving me NUTS!!!

I can't live with this forever, will it go away? Seems awfully soon to get it so strong only 1 day into the 2nd cycle..no?

Other than that, nausea is being kept at bay (about a 2.5 now) since Seth has been dillgent about the anti-emetics (Emend, Reglan, Zofran and Deximethasone(steriod)). Plus, lots of fluids, osmolite and some liquid zantec added. Robitussin liquid too for the phelgm control and now I have a pump to help with the infusions since the gravity bags, (although a GREAT improvment over the bolus) tend to clog with all the suppliments my Mom keeps puring in.

I'm not taking much of anything by mouth, although pain (at the moment is near zero). No Mouth sores or even sore throat strangely enough..??? Im sure they will return with a vegence over the next 2 weeks....

Can you believe it??!? Just two weeks of radation left!!

I just finished the 4th week...Yoooo HOoo!

(ooh, that sounds good, a Yoo Hoo, haven't had one in years smile

I had a KitKat and a Twinkie during chemo yesterday...The nutritionist told my family to let me have whatever I felt like, so of course I'm taking advantage of it smile In any case, I'm trying to be healthy.

I think a big part of the nausea is from all the spit, saliva, gunk or whatever...so eating is not appetizing.

The apartment does have a kitchen Amy, but you're right no one uses them in NY. It's wierd, but when you walk out the door and there are 50 restaurants (all that deliver!) within one block, I guess cooking at home doesn't seem that appealing.

Sounds like quite the party all of you visiting!! Wait till I get back to the lodge where we'll have more room!

Gail, how is Barry doing? Getting close now!! Were you at the dog show with an entry? You're right, Zach is so big, he has to tip toe on the little patches of grass surrounding the sidewalk trees. He's adapted quite well considering he's used to having 16 acres to himself.

Is there anything I can do to help the WBC? Also any advice on this ringing!?!?!?!?!??

Thanks to all!


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
#45944 09-10-2005 12:02 PM
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Hey Michael --

You (and Barry) are now on the out-bound course -- keep on keeping on!! It's only two weeks and 2 days left for Barry (would have been 2 weeks and one day but the machine was down one day) and he's doing pretty well. He is still eating and drinking by mouth and his weight is still above when he was first diagnosed (but he has lost a lot of the "excess" put on before treatment, at least 1/3 of that the first week after the PEG was inserted due to nausea and bloating -- until he got the Reglan). His throat is pretty sore, worse when he eats as he is battling a thrush infection that comes and goes -- but no actual mouth sores, just very irritated on soft palate and around uvula (and probably back of tongue which is getting a lot of rads). He takes pain killers before eating, which works. The doc wants him to eat and drink at least some as long as he can to avoid swallowing problems later, tho they have set up an app't with swallowing therapist for week after next (routine for all HNC patients). Our RO gets on the cases of folks who don't keep swallowing, so maybe you should keep on eating those Kitkats and other "healthy" treats! Barry eats 5 small meals of about 350-400 calories each which is easier for him -- he gets full more quickly than before and we wonder if the "balloon" on the PEG is causing that or whether it's a result of the meds he's taking. He doesn't have too much mucous, takes the guaifenesen syrup too and uses a humidifier at night which really helps. Also sleeps with 3 pillows. Lots of salt/soda rinses and GelClair, also uses a probiotic for thrush as well as his prescription meds.

Re dogs -- yes, I was at Westminster with an entry -- did this for some years and finally, it got to be too much of a hassle. Last year I went with a friend and her dog (stayed at Hotel PA) and I recalled why I stopped showing there! Quite an experience, though -- once I was sitting with my dog on the "bench" (the little stalls each dog is in) and I heard someone say "Oh, nice dog!" and I looked up and it was Cary Grant!!

As to the tinnitus, I think it often resolves over time but we were told by our MO that the cisplatin hearing losses can be permanent (why Barry declined that drug). You should ask the audiologist. I have some tinnitus and there appears to be little that can be done though my ENT says some drugs and biofeedback have shown positive results -- varies by person.

Don't know about WBC -- Barry's is fine so far but platelets are dropping -- so far OK but if they go below 100K they won't give him chemo.

When you get through you guys ought to come down here for a party -- we will have Yoo Hoos for you!

Cheers, Gail and Barry


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!
#45945 09-11-2005 04:11 AM
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ringing....ringing.....ringing!!!!!

It's driving me CRAZY!!!

Is there anything I can do????


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
#45946 09-11-2005 08:15 AM
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Michael, is there another Doctor you can talk to about this? Oh my gosh, I could not take it either! So sorry you have this going on too! Know that I am thinking of you and praying, too! Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#45947 09-11-2005 10:56 AM
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Hi Michael,
Hope the ringing subsides. I find the doctor's response really unacceptable. Of course, we all hear the risks and play the odds but we expect symptom management and control and palliation when the untoward happens to us. I hope this week brings some relief and better times for you and yours. I don't know what they can do for the ears - certainly an ENT should take a look - doesn't wax get plugged up as a side effect sometimes? Keep good thoughts for John- chemo #3 this week (maybe!). 10 more booster radiation txs and we're done. You are well on your way too!
Peace and all good things,
Janet


Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
#45948 09-11-2005 12:20 PM
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Hi Janet. Congrats to John for making it this far down the road...He'll be in my prayers as we both wrap up.

The RINGING is getting out of control!!!

This afternoon it's gotten worse and totally captivates my attention 100% of the time...I feel like running out in to the streets screaming....

I really can't take this. Does anyone have any ideas? Experience with this? Gary...Didn't you say you experienced this, but maybe not to this disgree?


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
#45949 09-11-2005 07:25 PM
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I had ringing in my ears for some time and also earaches, but nothing serious enough to warrant stopping the treatment. They did cut it short to 2 Cisplatin treatments for other reasons

I should qualify this - I have been a bass player for many years and have spent a lot of time standing next to a 120 dB ride cymbal without hearing protection - so tinnitus and I are old buddies. I am hearing a ringing right now as I did a DJ gig this afternoon - sometimes it manifests itself as background noise or buzz and it's usually worse after loud sound exposure. Between the radiation trashing my eustacian tubes and the Cisplatin, it was tough going for a while. I did however do well on all of my hearing tests and the final one actually showed an improvement in my midrange. My hearing returned to normal after the eustacian tubes regenerated themselves and started draining again, the earaches stopped as well.

WARNING: A small percentage of Cisplatin users experience total deafness - let your doctors know immediately what is happening so they can decide whether to keep you on it or not.


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)
#45950 09-11-2005 10:12 PM
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It's 6:am here and another night of little sleep due to the constant ringing.... UUUGH!!

Of all the things to be dealing with right now.

I am going to talk to the accupuncture clinic today too, maybe they have some ideas.

Any others?


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 16+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
#45951 09-11-2005 10:13 PM
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Hi Michael,

I can't believe you only have 2 weeks left! You're almost there! I can relate to the ringing in the ears since I have it now 24/7. I did 3 rounds of cisplatin and between that and the damage the rads did to my eustacian tubes, I now have permanent ringing and I also had to have tubes placed in both eardrums for drainage. My ENT said the ringing will most likely be permanent and also looks like the tubes are, too. I've adjusted to the constant ringing / humming and (now don't laugh), I sleep with the TV on. For me the noise from the TV seems to distract from the ringing noise and allows me to fall asleep quicker. Remember, though, that we are all very different and hopefully once treatment ends for you, so will the "voices" in your ears (that's what I refer to them as!).

Hang in there, Michael - it's almost over!

Many hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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