Rough Time - Post Treatment

[Surroundedbylove]

Edited

[RixInPhx]

SBL-

Wow, I didn't realize you had such complications and were going thru such doubts.

It does sound as though there's a lack of care and knowledge regarding the left-over side-effects of CRC treatment.
Have you had an opportuinity to get a second opinion on your liver treatment?
I wonder if there isn't somebody (like the Dr. Personality at MSLCC, whom I understand is a cancer/liver specialist) to consult with?
Studies and data may not have been published, but there IS specialized experience/knowledge out there.

Arising exhausted every morning, and dragging yourself thru the day just to get home again, certainly isn't enjoyable or fulfilling.
Rather than continuing as-is, or throwing in the towel, I would look for another course of treatment for the problems, possibly reduced-dosage 'maintenance' that doesn't come with a projected expiration date.

I dunno; I certainly feel for you and don't have much to offer but sympathy.
Please take care and share/vent here all you want.

Peace and prayers,
-Rick

[jeanette57]

Ok forgive me if this sound bad!

1- I am a diabetic- so when chemo/rad has mucus running 24x7- I wore diaper at night- slept great with pain pills= got up took hot shower (really great girly soap) and smelled fantastic- My friend (guy loves Irish Spring)
2)- start SSI or SSDI paper work now- you need to be home with a ruined immunity system. I had to quit immediate (immunities gone)
3) had liver posioned -server from off spray- mom had west nile and I had to care for her pets- one bottle a week did it!-
This took me 4 years to heal - milk thistle and odd water treatment with your feet (biggest pours on yor skin)- I could only 2 out of five because the drain on my body was terrible!
4) Hum- I have several vegan friend who want to detox me now after chemo-but some of their treatment are not legal- Plus they stink and some taste funny- juicing those green skunk weeds not for me yet! I do love the mineral mud wraps!
5-what are you doing for nutrition? This more important than meds-Do you even know what to eat for yor liver? Learn! go to university med library and find out! Age/gender makes a difference! Is there a liver support group (GI offices have great liver sources)
These are just a few suggestion- hope they help!

[RixInPhx]

Jeanette-

Very nice presentation of helpful info; succinct, yet clear and complete.

2)- start SSI or SSDI paper work now- you need to be home with a ruined immunity system. I had to quit immediate (immunities gone)....

Can you give some assistance here?
I think SBL has looked into qualifying, and hasn't found the right categories.

Thanks,
-Rick

[CheeseHead]

SBL,

Don't have anything to say regarding your medical issues but I'm very sorry you're going through this. Hope you can make good choices.

All the best,
Cheese

[jscho]

SBL, sorry to hear of your health issues. Are you confident in the expertise of your hepatology team? My hepatologist specializes and conducts research in hepatitis. A doctor like him might be useful to find better means of treatment for you. Maybe there are alternatives to steroids? As for drug-induced diabetes as a side-effect, it is manageable. It's not fun to have to monitor your blood sugars and self-medicate, but not too difficult either and may be the lesser of the evils.

Please don't beat yourself up over feeling tired and less productive. Liver issues are serious, and can also lead to debilitating tiredness even without your sleep problems. It is often hard to accept these limitations, and most people around you won't understand because they see someone who looks healthy.

Best wishes,
Jeremy

[KarMel]

This is the "ship in uncharted waters" feeling I get when my onc says I have exhausted all standard treatments. OK, so what do I do now? Plus, my ship is starting to sink a little bit.

I agree with what prior posters said re:
1. Is it time to look in to Disability? Your cancer center might have a social worker than can help you start wading thru the paperwork. You would need statements from your GI team as well, obviously.
2. Have you thought about going to somewhere like Mayo or Cleveland clinic for a second opinion? Or have you already done that?
3. This is just an almost unimiaginable ordeal...to get thru cancer treatments and face another life threatening illness right on the tail of it. You are such an important part of the club, please reach out to family and friends, and here, for whatever support you need. It may be time to let others who love you share the burden.

Sending virtual hugs and real prayers.

[beth568]

SBL, I'm so sorry you're facing all this. So many cancer patients, I think, find themselves struggling for answers after cancer treatment is over and they're left with the myriad side effects that chemo inflicts. And yes, everyone seems to think that once you're done and reach NED status, you're "all better." Certainly not the case for most of us, though you've been through more than many.

I do hope you can find an answer, whether it comes via a different treatment team or from within yourself. You know that everyone here is behind you to offer moral support.

[tammylayne]

Dear SBL;

I am so sorry to hear about your situation. You have been my beacon during my reversal, I read your postings over and over,,,,I still do. I want to pay it forward, but I don't know how.

Please forgive my medical ignorance, but do you qualify for a liver transplant, or is this nothing like that. I will read over your post again, it was alot to absorb and my first instinct was to reach out to you.

Second opinions,,,you know we all preach it here. No matter how much you like your docs, it never hurts, or at least see if they will bring it up at one of their weekly meetings where they discuss the odd and unusual cases. Sometimes one of them has heard or read about a potential treament....you never know. But since we are talking about your quality of life,,,your timeline, maybe a second opinion should be a must??

I do agree with the other posts that addressed the fact that this neat little box of "finished treatment...boo boo is all better" thinking just does not apply to many if not all of us. It is kind of like the domino effect. It is interesting...I am a big supporter of a product called Critical Illness Insurance...opposite of life insurance. Anyway, the man that developed it was a famous heart surgeon. He did so, becuase he found that while modern medicine was helpng him save more and more heart patients, many of them were dieing, or at the very least having a very poor quality of life after because the business of surviving was wiping them out finanically, which as we know is very very stressful.Not good for anyone...esp heart patients. So while he was doing a great job, many of his patients were wishing they hadn't survived. Different circumstances I understand, but the point being that sometimes we are so focused on the predicted outcome, we lose sight of the complications it creates along the way.

Last fall my surgeon gave me a blast for having 5 CTs in 2.5 months. Wrong person to blame in my mind...but his anger was that he didn't want to help me survive CRC, only to have me develop something else due to too much radiation. I don't think that after the fact issues are always brought into the picture...the long term picture.

SBL...I hope your docs come up with a plan. I would also look into short/long term disability with someone that really understands your policy at work. You are unable to do your work due to a medical condition that your doctors can attest to. It SHOULD apply, it most certainly is worth looking into again while you figure out how to qualify for government benefits. Your quality of life has been drastically affected here. Please reach out to anyone and everyone that can help you to get things back on track.

Sending you positive energiies and lots and lots of gentle hugs....

Tammylayne

[Surroundedbylove]

Thank you all.

Yes - my hepatologist is part of a well regarded, nationally recognized research team. I actually found him beginning with research from Jeremy (thank you jscho).

Good idea to go back to the oncologist and explore post-treatment issues.

SBL

[kims]

SBL -

I'm sorry to hear that things have been so rough on you. Here'a a couple of resources that mjay be helpful for you.

It sounds crazy that you cannot qualify for disability. You might try contacting the Cancer Legal Resource Center and see if they have any suggestions or resources for you. They have a toll free number that you can call. It is staffed by attorneys and they may be able to help you out with the disability issue or refer you to someone who can help. Their number is (1-866-THE-CLRC)

Here's another website withj some links for pro bono legal services for cancer patients: http://cancerfairygodmother.com/pro-bon ... -patients/

Another suggestion for you that may take some pressue off you at home (if you do not already have a cleaning person for your home) - there is a non profit organization that arranges for cleaning services once a month for cancer patients. It's called "Cleaning for a Reason." Their website is: http://www.cleaningforareason.org/

I hope these help!

Kim

[IceGal]

Oh, wow, I am so very sorry to hear all that you are going through.

Just a thought that came into my mind - do you have a rheumatologist as part of your treatment team? They are the experts on the auto-immune diseases and might have some other options up their sleeves on different treatments for you. Maybe something off-label, such as Rituximab being used for Lupus, might be an option for you to try that might help and give you back some quality of life.

I'm deeply sorry for all you are going through, and in awe of the grace and strength you show in your posts here and in getting through your everyday life. You are an inspiration.

[juliej]

SBL, like the others, I had no idea you were going through this! I've noticed more and more cancer centers are starting post-treatment health programs. I suspect this is largely due to cases like yours where the survivor has multiple post-treatment health issues. The regular medical community just isn't prepared to handle the complexities of a patient who has had radiation, surgery, and various cytotoxic drugs running through their system.

From what I understand, autoimmune hepatitis is slippery -- each case is different. By the time you get to "chemo-induced" autoimmune hepatitis, it must be really difficult for even your doc to find info. If it were me -- and I'm a researcher by nature, so this may not appeal to you -- I'd go to a university library and search the databases to see if anyone is doing research on chemo-induced autoimmune hepatitis. Then I'd send them an email, explaining my situation. (I actually did this once for a friend and the head of the research team wrote back immediately.) They might know someone that you could consult with about your issues. The notes from the visit could be sent back to your local hematologist.

It's scary to be in a position of deciding whether to continue drugs that are significantly reducing your quality of life -- or head into the unknown by discontinuing the drugs. In the idealist of worlds, your type of autoimmune hepatitis wouldn't require long-term immunosuppressive therapy and going off the drugs would give you back your health. I hope and pray this is the case!

[Surroundedbylove]

Edited

[SkiFletch]

SBL, I unfortunately have little knowledge to assist you in your difficulties here. I can however offer you some thoughts, prayers and swinging chickens that you can get this crappy situation back to some level of normalcy. As was mentioned earlier, you've given so much love and support to others here over the years, and I wish I could pay it forward myself. Know that there's much love and support here for you SBL. We're all pullin for ya