#48460 07-05-2007 11:31 AM | Joined: Jun 2007 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2007 Posts: 26 | Hi. My mother started treatment on June 25. Carboplatin chemo 1x per week on Mondays and radiation 5x/week for 7 weeks. Her first week was tough. She had a trache put in as a precautionary measure (as recommended by the dr. at Sloan Kettering) and had to spend 4 days in the hospital. She was vomiting a lot, but the doctors and nurses figured it was due to a change in her food (we feed her through PEG) or from the anesthesia used for the trache procedure. This week the vomiting continues. The RO does not think it is from ethyol considering that she gets sick more than 4 hours post injection, but the vomiting is just getting worse and I am worried about her getting enough nutrition and liquids. Today has been the worst. She has been sick 3 times already today. Has anyone else experienced this? Thanks for your help. I have been "lurking" on these boards since she was diagnosed and just need some help. It has been an awful day.
Caretaker to my best friend, my mom. Age 60 - never smoked or drank. St IVA oropharynx. 37 radiation tx, 8 carboplatin tx. Diag 5/31/07-TX completed 8/16/07-good PET 10/10/07. Passed away 3/28/08 due to weakened blood vessels from tx. Now watching over her triplet grandsons born on 5/19/08.
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#48461 07-06-2007 03:32 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hello Amy
Welcome to the forum. Lurking is learning on this site.
I can not comment from experience as I only have two rad tx so far and will start chemo shortly.
Two things I do know however is that chemo will make your mother sick and vomiting is not at all uncommon. Chemo is no cake walk.
The other is that your Mom is in the number one (#1) cancer center in the world. If the doctors are not alarmed then you should try to relax a little.
I know it is hard to watch someone you love go through this. And it is not easy to relax. But feel confident in the doctors there.
I have heard some say that they may try a different chemo if there are bad reactions. But vomiting is a normal reaction. I wish I could tell you more.
In your "lurking", I presume you know about the two search engines here. There is one at the top and one at the bottom of each page. Use them as they contain most answers if you have the time to search and read.
I hope things smooth out for your Mom and all goes well.
Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#48462 07-07-2007 01:23 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | I'll bet $100 it IS the Ethyol -- our RO (at Johns Hopkins) says that lingering or late-appearing nausea is the chief reason that he has to stop administering this drug to his patients. (In fact he doesn't give it routinely now because of so much toxicity, only if he cannot spare salivary glands through tomo radiation planning). My husband was one of the very few that was able to tolerate this drug all the way through treatment, most (he says) make it 2-3 weeks at most. As it was it made him sick more than once, and they NEVER gave it to him on the days he had his carboplatin chemo (which he too had once a week). Too much! We also found that folks getting cisplatin had even more problems with Ethyol. What protocol is being used to adminster the Ethyol (amifostine)? The Medimmune guidelines must be followed to the letter (we know because my husband's daughter worked for Medimmune at the time and she told us the "back story" on amifostine and side-effects). The protocol is: 1) 90 minutes before injection, take a serious antinausea medication -- Zofran or Anzemet. Compazine will NOT work for most patients. 2) 90 minutes before injection, start drinking (or hydrating through PEG) with 20-24 oz. liquid, slowly to avoid nausea and ending just before injection. 3) Patient may also benefit from administration of an antihistamine such as benedryl or a prescription med. 4) immediately prior to injection (which should be no more than 30 minutes before radiation treatment) patients' temperature, blood pressure and other vitals should be taken. If BP is too low (say below 100), no amifsostine. Injection sites from previous days are examined, and if there is a rash, obvious inflammation or other probem, no injection. A generalized rash (usually starting on the back) means that amifostine should probably be stopped completely. 5) Ethyol to be administered by *injection* -- two 250 mg shots (in sterile saline) -- and hydrocortisone cream rubbed over injection sites. This is done 30 minutes before radiation so need good coordination here. 6) Patient must remain quiet for about 15 minutes and then BP taken again. Then he/she can go to treatment. 7) After radiation, stay quiet and sip water or suck ice to reduce chance of nausea. No food for a little while. Your mother (with her tonsillar/base of tongue) cancer and as a non-smoker is most probably an HPV+ cancer. Have they tested her for this? If not, insist as this is a biologically different cancer that responds better to treatment and is far less likely to recur. If Sloan doesn't do it (can't imagine they do not, but...) Hopkins does. Do a google for HPV and head/neck cancer. A paper published May 10, 2007, New England Journal of Medicine, D'Souza et al is very enlightening! In the meantime, stop the Ethyol and get on top of this nausea problem. Make sure she is getting appropriate antinausea drugs, that is, one of the serotonin drugs such as Zofran, Anzemet or Kytril -- expensive but worth every penny (my husband says!) -- even a short or broken course of Ethyol can help. Our dental oncologist recommends every other day for those who are having problems, he says in his experience it works just as well. (And it does work, studies have shown 15-25% improvement in salivary function BUT this is not worth it if it makes her too sick to have her real treatment. It is the cancer that is the first consideration!) Gail
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!
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#48463 07-09-2007 01:18 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Gail
Thank You for the "Education". I printed two copies. One for home, one for the glove box.
amy b
Experience makes the difference!
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#48464 07-09-2007 02:18 AM | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | I can attest. The amifostine may bee good stuff but I didn't make it all the way with it. I had really bad headache's (like a migraine) from the beginning and then just had to give it up because of nausea for the last 10 treatments. Seemed worse after my two week break in the middle.
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 | | |
#48465 07-09-2007 02:36 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I did Amifostine through most of my treatment though they did not follow all those instructions for administration (gave it through a port) which may have made the nausea, which I had almost every day when I had it, much worse). I found the nausea lasted for about 3-4 hours after.
I think the "remain quiet" and "stay quiet" in the instructions Gail gave are really informative and important since when I vomited from the Amifostine, it was almost always because I had just stood up suddenly or engaged in some other form of movement. The good news is that that meant I never needed to vomit when I was under the rad machine wearing a mask (well-actually only once, and that was at the very end when I was just yakking all the time) because I was lying so still. Is your mom's vomiting tied to some period of movement beforehand (say, returning home after radiation or something?)
Anyway, after all that sticking it out with the amifostine, I'm not actually sure how much it helped me. I still have some saliva-but that should have been true anyway as they were able to spare one of my parotid glands. If I had been told it only has a 50% chance of working at all, I never would have stuck it out for so long.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#48466 07-09-2007 07:16 AM | Joined: Jun 2007 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2007 Posts: 26 | Wow. Thank you so much. After such an awful day on Thursday when I was ready to pack my bag and run away from home (not really), the RO took her off on Friday and low and behold, it was the Ethyol. Apparently the RO said that in Europe they don't even use anti-nausea meds for Ethyol and the patients just have to intake a lot of water approx. 1 hour prior to injection. We will see if that works, but I am definitely going to raise the points mentioned by Gail Mac. What a great post. Thank you all so much!
Caretaker to my best friend, my mom. Age 60 - never smoked or drank. St IVA oropharynx. 37 radiation tx, 8 carboplatin tx. Diag 5/31/07-TX completed 8/16/07-good PET 10/10/07. Passed away 3/28/08 due to weakened blood vessels from tx. Now watching over her triplet grandsons born on 5/19/08.
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#48467 07-09-2007 06:53 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I think that the people who made it all the way through Amofostine I can count on 2-3 fingers. You must have had some rookie intern at MSKCCC. Like Gail said it's almost a no-brainer. We've seen the reaction a LOT here.
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)
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