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Scheduled for radioembolization consult with radiologist

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Hi all!

I would first all like to thank each and every one of you on here for the much needed encouragement and information given to me regarding my diagnosis. Words cannot express my gratitude, this is such a difficult thing to face and to battle every day.

I've known about this consult since my last Dr visit but just haven't mentioned it too much here. My doctor did not suggest this until I mentioned possible direct treatment to my liver where my cancer metastasized to. I do wonder why, but he does say that he hesistates to suggest some treatments due to the fact that I have barely tolerated any types of chemo. I've had 3 treatments then had to skip the 4th in a month more than once. Could not take oxalaplatin at all after 2 infusions.

I digress. I am curious if anyone here has had this type therapy and how well did you tolerate it? When the Dr and nurse discussed it with me originally, they did not seem optimistic and warned of severe nausea, pain and fevers that will only go away weeks after the radiation has stopped inside the liver. Microcapsules are injected directly into the liver and deliver a high dose radiation that dissipates in several weeks.

Having just read about the procedure and the after effects, it sounds absolutely horrible. It is not curative. The nurse also stated that she was concerned that due to my history of low tolerance to anything, that this would be especially rough on me. Interestingly, she called me 4 hours later at home with a whole different attitude, encouraging me to do this and she scheduled the appointment for the 19th. I was already about 50% sure that I was not going to go through with it but after reading more about it, I'm fairly certain that it would be more than I am willing to do. The after effects could last on and on, the complications sound problematic. I'm not sure why the nurse changed her tune, maybe the Dr told her to encourage me, I don't know.

I would really love to hear from you if you have had this treatment. I could change my mind somewhat.

On a side note, I do appreciate all the suggested treatments you all offered on my previous thread, I did look into them. Sadly my case would not fit in to those treatments. I have already had a major colon resection, 13 inches of colon removed and don't think I am a candidate for further surgery. I did have 28 radiation treatments and 3 rounds approximately of chemo. This has been going on since October '16 when I was diagnosed.

There is one option of chemo left to try which causes fairly serious diarrhea and hair loss so not sure that I am going to go for that either. I'm not giving up yet but at this point where I am still sick from my last chemo on November 2nd, the thought of starting such a treatment gives me the chills. Correction, I'm not sick daily, but a lot. I do get out some but the appetite is seriously waning and it's hard to find food that appeals to me and does not make me sick. Sound familiar?

One last note...I just got results from my last CEA done on my last Dr visit, took over a week and a half! It was 96, up from 30. That's the highest it's been. I don't really know what to think about my status medically but I know how I feel in my gut and it's not great! I've started giving away stuff and started trying to make plans. Just can't get the nerve to go to an attorney to make my will but I must do it soon!

Take care and God bless you all!

Karen

 

 

Trubrit's picture
Trubrit
Posts: 5143
Joined: Jan 2013

That is one thing I have not done either. 

Last week I purchased my burial site and then went to the funeral home for infomation on that end.  I have been refused life insurance, so I will start putting money by for the funeral. 

Now I plan on living forever. 

My heart hurts to hear you say that your gut tells you things are not good. It is truly an awful place to be. 

But you know, Karen; it aint over 'till the fat lady sings.  I do hope your days will not all be filled with dread, and that you find hope and peace. 

I think the other term for radioembolization is Y90. There have been several on the forum who have had this procedure. It was an option for me, but we went with the thermal ablation instead.  I know someone with experience will be along soon, for you. 

Stick with us, and we'll help with support as much as we can.

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6476
Joined: Feb 2009

It's got to be hard to feel that in the gut and I'm not sure what to tell you.  You have to do what you feel is right in the direction you want to go with treatment.  I'm sure that you have thought about this constantly.  I've not had this treatment so I'm not able to give you any advice, but I'm hoping someone can.

Kim

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks Kim and Tru. I'm really sorry to be such a downer but I've had this feeling in my gut a long time, basically since the whole thing started. I am fighting and I wish that I didn't feel that it's my fault that things keep going downhill just because I've had this gut feeling about it all. I guess I've had a hard time feeling positive at all but I want to. It shouldn't be why someone gets better or not, it hardly seems fair.

Thanks for the input. I am going for a repeat CT in the morning.

Take care all!

Karen

Oh by the way Tru...how did you go pick out a burial site and etc? I just cannot even think about going but I sure need to. You are a trooper!

Trubrit's picture
Trubrit
Posts: 5143
Joined: Jan 2013

I live in a rural Nevada town, so not sure if this applies to other bigger towns or states. 

My husband and I went to City Hall and talked to the lady in charge of burial plots. We then met with a man down at the cemetary and walked around. My husband's father (and one day his mother) and young neice are planted there, so we just found ourselves a nice spot near them. 

$250 per plot for us. 

The prices for the funeral are horrendous, of course; and they tell me I can't be burried in a bag, which is rubbish. I will be looking into that online. 

Best be prepared and not leave it to our loved ones when we're out of here and their emotions are tender. 

And you are a trooper as well, Karen. At the momoent you're stuck between a rock and a hard place. Keep on tropping my friend. 

Tru

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I did the will thing before surgery along with giving out my passwords and access information and a list of assets. I did a shortened version of this before diagnosis too. I've been working on getting my estate into a good position should I not be around in the short-term (less likely these days). Something I should have done anyways but there's more pressure with cancer.

I listen to a series of podcasts called "The Lifetime Income Series" and they covered the case of a lawyer that had about 2 years to live so he retired and came up with a plan for travel and enjoying the next couple of years. So there is some financial planning stuff out there.

This is tough, tough stuff and the Stage 4 folks have it the hardest.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

I need to preface my comments by saying that I am not an attorney and this is not legal advice.  Instead, I have served as the executor for both my father-in-law and my mother-in-law and through that duty I participated in numerous financial/legal consults and I then managed their affairs for nearly a decade.  What I learned from that experience is the necessity of preparedness for end of life issues.

It is difficult to achieve, but you must purge your emotions during the process of coordinating all of these tasks.  As Tru mentioned above, emotions will become dominant during and after the death process.  If all legal and financial responsibilities have been addressed previously then the grieving process can occur unabated.  Plus, the legal and financial decisions will have been made with a clear mind that is not overwhelmed with grief.  The outcome is generally better when end of life issues are coordinated prior to death.

Listed below are some of my recommendations:

1) Do not attempt to accomplish this duty alone.  Solicit and incorporate help from professionals and a trusted friend.  End of life issues can be a minefield of legalities.  Unless you are an estate attorney, we don't have the requisite knowledge to know what to do.  Get professional advice and even help if necessary.  That will enable you to accomplish those tasks with confidence.  However, your emotions will pop up out of control at times and that is when you will need the solace of a friend.

2) If you do not have a Will then get one immediately.  If you have one then review it to determine if it is current and matches your current desires.  Getting a Will is not difficult, painful or expensive.  Not having one will result in a very difficult, painful and expensive estate settlement.

3) Organize your important documents such that anyone can sort through them with ease.  Create an inventory of those documents (much like a table of contents) and place it with those documents.  Secure those documents in a safe location (fire proof safe or bank safety deposit box) but make sure the executor knows where they are and that he/she has unobstructed access to them.

4) Death is not cheap.  Investigate all of the details now and get over the sticker shock.  If you can afford to do so I recommend that you identify and acquire a burial plot now.  Likewise, I recommend that you meet with a funeral home and discuss arrangements.  Some will even allow final arrangements and payment before hand.  No doubt, this is a very emotional task but it is even more so for your survivors.  As a favor to them, make all of these coordinations beforehand.

5) Take the same approach to your stuff.  It is also very emotional for survivors to sort through and distribute your personal items.  Identify those items that have value (monetary or personal) and retain them but take a hard look at all the clutter that you may have accumulated but no longer use or need.  Get it to those in need.  Someone must accomplish this task and you are the best candidate.  Sorting through every drawer and every box in someone's house after they died is a tedious, emotional, overwhelming job, but it is necessary.  Accounting for and disposing of all remaining personal property is a serious responsibility for the estate executor.  Google the word: fiduciary responsibility.  That is the legal liability borne by your estate executor.  You can make that person's task easier by cleaning house now.

I had several heart-to-heart conversations with my parents-in-law during the final years of their lives.  We cried, but we accomplished the task, and I was able to settle their estates in a timely manner without any legal mistakes or beneficiary arguments.  Not an easy task.  Oddly, the one conversation that was most difficult for me was discussing with my mother-in-law the need for her to surrender her drivers license.  I teared up but it did not bother her at all.

Anyway, as I said above, it is easier to make these decisions, affect coordianation and then to purchase/contract for services beforehand.  It is emotionally painful but necessary and will ease the burden on your survivors.

Jim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I don't know anything about this treatment, sorry. I just wanted to say that getting things in order is a good idea. Just to have one less thing to worry about, it's not an admission that it's going to be needed any time soon. But none of us gets out alive so it's a good thing to have dealt with and planned for. 

I'm sorry that you have such negative feelings and the sense of doom. I have periods where I dwell on depressing things but have to snap myself out of it or I'll lose my mind. I try to just not think about the cancer and myself as having it. I hope you can find peace and acceptance at some point. Not being able to tolerate any treatments is really unfortunate. 

Hugs,

Jan

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks all for the great advice. I do plan to do all those things, just do not want to of course. I'm really not down in the dumps 24/7.  Most of the time I try to stay occupied and watch interesting movies or shows. Read online, cook and etc. Go out to dinner or shop. I didn't mean to paint such a dire image of myself.

Mostly I think I'm just frustrated with eveything which makes my attitude bad sometimes. I would still love to hear from anyone that has had the emobolization therapy or Y90, so far I have not heard from anyone. It really sounds rough!

Today I was unable to have my CT due to non-stop uncontrollable diarrhea. So everything is going to be pushed back a while. I have yet to figure out how to control that so I can do things. It happened last week at my MD appointment, that was rough. Also I need time to process things anyhow.

You guys take care

Hugs, Karen

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