1 reply to this topic

[sues]

Does anyone have experience with undergoing chemotherapy and the complications that are more likely because of SCI? Recommendations for specialists who should be involved, preparations made?

I have a very dear friend in Ohio, USA who has had a C6 quadriplegia for 37 years, is now 53 years old and got bladder cancer. His bladder was removed, he was in hospital for 4 months with complications directly related to his SCI (blood pressure, med mix ups, 5 intubations, temperature disregulation--to name a few). The possibility of these complications was not discussed nor planned for before the surgery even though they are known risks for quadriplegia. The surgeon had even said that his lungs were fine because he was young, not taking into account the respiratory compromise that would be expected from so many years of SCI.

Now he is to start chemo and AGAIN there has been no discussion forthcoming from the oncologist and physiatrist of complications that are more likely to occur or impact him differently because he is quadriplegic, such as aspiration from vomiting, heightened infection risk (his white blood counts are already low), etc. We want to anticipate and ensure he has support this time around for his special needs but have trouble getting info, statistics etc that will help him advocate for things like home health care and better monitoring, and additional professional help (like a hematologist?), etc. This is to be done outpatient and he lives alone .

Do people have experiences and resources they can share?
THANKS SO MUCH

[PetitMortVampyre]

sues, on Sep 23 2007, 08:18 PM, said:

Does anyone have experience with undergoing chemotherapy and the complications that are more likely because of SCI? Recommendations for specialists who should be involved, preparations made?

I have a very dear friend in Ohio, USA who has had a C6 quadriplegia for 37 years, is now 53 years old and got bladder cancer. His bladder was removed, he was in hospital for 4 months with complications directly related to his SCI (blood pressure, med mix ups, 5 intubations, temperature disregulation--to name a few). The possibility of these complications was not discussed nor planned for before the surgery even though they are known risks for quadriplegia. The surgeon had even said that his lungs were fine because he was young, not taking into account the respiratory compromise that would be expected from so many years of SCI.

Now he is to start chemo and AGAIN there has been no discussion forthcoming from the oncologist and physiatrist of complications that are more likely to occur or impact him differently because he is quadriplegic, such as aspiration from vomiting, heightened infection risk (his white blood counts are already low), etc. We want to anticipate and ensure he has support this time around for his special needs but have trouble getting info, statistics etc that will help him advocate for things like home health care and better monitoring, and additional professional help (like a hematologist?), etc. This is to be done outpatient and he lives alone .

Do people have experiences and resources they can share?
THANKS SO MUCH

Having gone thru chemo in my past, I can say the bastards (oncologist, nuerologists/etc) did not warn me about 70% of the bloody side effects. All I knew what what I had seen on TV (trust me, I only thought you lost the hair on your head, not ALL and I mean ALL your hair... from eyebrows/lashes to ya know). I was given Pamplets, which didn't assure me much, oh a lil nausea (hell I think my stomach came OUT ) may feel a lil run down, more like RUN OVER by a 18 wheeler..... Now mysituation is different as I am AB, so my reactions are def diffirent from his, obviously, so I can't answer from the right vantage point, not having SCI.

I started a therapy group (well not started, I found and joined one) and starting asking those further into treatment..... They told me what to ask, get of course the proverbial 2nd/3rd opinion (which insurance can screw with I am fully aware)

Sit down, and write a list of questions to ask them!!!!!! Tthere has to be some form of a patient advocate at Hospital for you all to refer to... that can help, Local chapters exist for cancer patients and family and friends of loved ones with cancer are all over the country....

ASK the Doctors, demand answers, hell, get a tape recorder and record what they say, so you are not relying on memory or scribbled writing later.

THEY HAVE to tell you, they are in violation if they do not. They MUST, here in the states, tell what the risks are.... We have rights, they cant just do what they want, without answers... tho many times they do.... <sighs>

I promise, there are tons of support groups. If you need help finding them, send me a personal message here, or via my MySpace Page (click on my name, it shows my profile)

And know that he is not alone, there are answers, just gotta find the way to ask them, and have them translated into english not doctor-ese!!!!!!!! Or better yet, write, er, type-their writing makes a 3 year old look like a calligraphy artist!!!! Weigh the pros and cons... Leave no stone unturned... if you don't like his/her/their answers, there is ALWAYS someone over their head to talk to, ask for their supervisor!!!!!!!!!!!!!!!!!!!!!!!!!!!

And Sues? Know now, that He's in my prayers, as are you, as well. Its rough, watching friends go through hard times, is rough, and you should know there are people out there for you, too, to help YOU through it as well. OOOOOOOOH and call the local disibility board/office, they will have resources to assist with the in home care, and perhaps answers to questions asd well, they are great people, they are there to help, and they do a damn fine job!!!!!

One last thought (as if thats possible for me.... perhaps they have never dealt with his situation, being SCI? Look into Doctors who are trained/experienced in SCI/Cancer Patients!!!! A suggestion)

Goddess Bless
Love, Light, and Laughter,

Corvette (and her Ambien, so if I typo'd or rambled, you know why)

Edited by PetitMortVampyre, 24 September 2007 - 04:58 AM.