Q's about chemo

cmn412 said:

it worked for me.
ROB
I had the chemo treatment combination of Cisplatin and 5-FU along with Radiation treatments. I was stage IIA. The chemo/radiation treatment worked for me and the cancer was not found when they went in and did the surgery ( MIE on February 2010 at Duke, Durham, NC ).

I was told by my Dr. that this was the standard treatment, as it has had showed the best results. Yes it is used in other cancers, I guess if it works it works on other tumors. He was aware of Clinical trial drugs and didn’t know of any he wanted to reuse (he did try them) at this point.

The point is the Cisplatin and 5-FU worked for me and hopefully it will work for your brother too.

My brother who lives in PA and is one year older than me also has/had EC StageIIA and he was given the same treatment at Hersery Medical center. He also had His MIE surgery there on April 2010.

God bless
callie

Gatoraid said:

Your Chemo Therapy
Hi Callie,

I am scheduled to start Cisplatin and 5-FU on September 28th and am curious about the side effects that you personally had and if now that you are no longer on them, if any of the side effects still bother you. I'm having and ultrasound and biopsy of the 2 suspect lymph nodes and that will tell my true staging. Without the ultrasound they assumed I was stage III but if I'm lucky it may be less. I've read on this site that people have long term symptoms of tingling/aching of their feet, fatigue and other symptoms. Of particular concern is the mouth/throat sores I read about. Eating and drinking is something I can do now and I'm hopeful that I can continue up until surgery.

As for the radiation I am getting 28 days straight (not weekends) of IMRT radiation. Is that what you had? What was your experience with that?

The chemo will be weekly and run concurrent with the radiation.

Sorry for all the questions but you have alrewady gone through what lies ahead for me. Any information you could provide would be most appreciated.

Thanks......Jim aka gatoraid

llamp0922 said:

Hi Jim,
I did the Cisplatin
Hi Jim,

I did the Cisplatin and 5FU @ MGH along with concurrent IMRT radiation in 2007. It wasn't pretty, but it worked.

I was diagnosed 7/13/07, was at MGH for a second opinion 7/20, ended up inpatient after having to have the g tube and trach surgically place, yet didn't begin treatment until 8/20/07. It took a month for them to get everything in place, have the radiation simulation and have a treatment plan created for the radiation, along with the port and g-tube placed. It felt like I was waiting forever, but the radiation planning seems to take awhile. I felt like they were minimizing the damage to nearby important organs.

As for treatment...if there was a side effect, I got it. Nausea, vomiting, nasty mouth sores from my lips throughout my digestive system, fatigue, low counts, dehydration, pneumonias, neuropathy, ear ringing and hearing loss (which continues today), thyroid damage, burns...well, you get the picture. It was not fun, but IT WAS SOOOO WORTH IT!!!! I had to stop Cisplatin after completing two cycles due to my hearing damage and toxicity. The chemo was really tough. I was unable to eat before treatment even began, and was g-tube fed for 4 months. I could hold that down, and had lots of gatorade thru the tube, plus home hydration and hydration at the infusion center. It really helps. They will offer you drugs...take them!!! Emend is the drug that helps the Cisplatin nausea, plus Zofran, Compazine, Ativan, Reglan (don't know if that is on the market any longer?). If they will help you, take them!!! Not everyone feels as rotten on the chemo/rad treatment. I either heard or read that those who get car sick or morning sickness tend to be sicker during treatment. The docs said it was the hardest treatment regiment to endure. I tried to remember if the treatment was kicking my butt, it was surely knocking my cancer out!

Who is your oncologist, radiation onc and thoracic surgeon? Let me know if there is anything I answer for you. Hang in there!!!

Positive thoughts, Jim!!!

Lisa

JimsBrother said:

Start of therapy
I may be privy to some information that will ease our minds regarding the start of my brothers Chemo and radiation treatments. The earliest dates they were able to schedule the actual treatments, was during the end of the first week of his vacation which put him in Florida at that time. So he had to decide between cutting his vacation short, and come back about a week early or begin the treatments the day after he returns. So, what looks like a 1 month delay to begin his therapies, from now till then is actuality maybe be 7 - 10 days. The planning and tests he is set to have will all be done before he leaves so everything will be ready the minute he returns. I understand there is much to do with the actual planning of the IMRT radiation therapy that needs to take place prior to it starting. IMRT radiation therapy is not a simple process.

We had thought also about speaking with the doctors at Dana Farber Cancer center in Boston because they are also one of the top centers in the country, The first possible appointment he could get was September 9th, so he set that up. Yesterday they called and said they needed to change this appointment to the 14th. If he would have listened to me and gone there first, the delay would have been much longer. Thank God he didn't listen to me and try to deal strictly with this center. He set his appointments for his initial appointment, and the appointments for the second opinion, long before he would have even been seen at Dana Farber.

In a perfect world, he would have been set to have all of the test he was going to need when this diagnosis was first made. Better yet, if the doctors would have done a minimal amount of investigation back in October when he had the very first symptom, choking on food and visiting the ER, he might have been through all this by now and on the road to recovery.

He still hasn't had the ultrasound that would give a more definite staging of his EC, something I now know is critical to this process and that in my opinion is the fault of the doctors and his Oncology Medical specialist that is supposed to be the one arranging all of these things for him. We didn't know or I am sure we would have asked for the ultrasound right at the start.

That is exactly why we are here. We have to rely on you all to assist us so we can do what we can within the confines of everything else that factors in to something like this. You are his lifeline, his teachers for this cancer course he has been enrolled into by no desire of his own. We need you to be upfront, and yes even when someone disagrees with him or I.

We have both spent hours and hours and hours in deep discussion since the day of his diagnosis. He is my big brother, back when I needed him to step up and make me do things I really didn't want to do, he did exactly that. Now it is my turn to step up and I am ready for the job. I told him on day one, he may not like what I have to say sometimes, but I will say it just the same. I first thought I would try and just give him the good not so disturbing information i found about this cancer stuff. I thought at first that would spare him the ugliness of this. But that would have been wrong and I knew it. He is faced with the biggest problem he has ever faced, and I will do my best to not let him face it alone.

I think I said a lot more than I set out to say. So I will end now and sleep through the rest of this post. Like William said, we both stay up too late.

Thank you all once again.

Rob

BMGky said:

The staging is the key to
The staging is the key to type of treatment. The IMRT does take a little planning. Husband diagnosed December 7, 2009. Got all tests in just before Christmas. In the two weeks after diagnosis, met with surgeon, got PET scan and got the staging scan whatever it is called as well as "measured" and tattooed for the radiation. Went to Disney World and visited with our 8 grandchildren. Great time even with the shadow of treatment in background. Doctor said that the two weeks involved wasn't a problem as IMRT couldn't start until January 11th. His team, not a board, all discussed plan of treatment and IMRT setup and walk through had to be completed. The team selected the surgeon. Our first one was great and placed the jtube; however, the team placed us with a thoracic oncology surgeon. The two surgeons work together. A third one assisted with his operation. I noticed you said gtube. Most everybody gets a jtube. I didn't know this difference was important but it is. A g tube can take bolus feeding and a much greater amount. A j tube uses a kangaroo joey pump and prepared supplement. The j tube goes into the jejunum which has a smaller capacity. If you have a j tube, don't let anybody do bolus feeding. Over filling the j tube results in back fill into the stomach and is most painful. You'd be surprised if you don't watch out, inattentive medical personnel will confuse the two. We learned the hard way. When we were experiencing problems, our son-in-law, a physician in another state, who we decided to ask--we were trying to handle things ourselves, said the capacity is so much smaller. He gave some great suggestions until we were given the pump. Also, my husband had extreme difficulty with swallowing, another issue, and could not take tablets. People recommend crushing them and putting with food. Son-in-law said there are many liquid equivalents to tablets and to ask for the liquid. All it took was asking our team, and immediately, all medications were changed to liquid, and lots of problems solved. I kept a log and monitored responses, BP, sugar, bathroom habits, food intake, medicine problems. It helped the doctors respond to adjustments. Also, it gave us a feeling of helping in our chance for cure. I could go on as there is so much we have learned in these 8 months. WE feel so blessed to have a fighting chance. Hopefully, your brother's treatment will go uneventfully. Just be there for him if you hit a few bumps on the road.