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Treatment Finished/home from Hospita

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

Wow, what a week. Just got released from a 6 days stay in the hospital. Did not expect that one. Here's what happened.
At the onset of week 6 of treatment, my pain was becoming pretty intense. My whole underside was one big open wound. Sunday night as I walked about the house I literally was leaving a trail of blood in my wake. So Monday morning I refused to go to another radiation treatment without first talking with doctor. My husband was also upset because he didn't feel I was getting strong enough pain meds. Doctor took one look at me and gurney was called to take me upstairs for admittance. Doctor said I had a "severe and rare reaction to radiation", and that my "burns were extreme". In addition I developed a neuropenic fever, and was placed on antibiotics. Then, as if that's not enough, my blood pressure tanked for about 2 days. As my white cells slowly begane their climb upwards from last dose of chemo, my red cells were falling fast, and I ended up with a 2 pint blood transfusion.
They say that treatment for anal cancer can be pretty brutal and they weren't kidding. First 3 days of hospital stay we were dealing with affects of radiation, last 3 days we were dealing with affects of chemo. But I made it through to the other side and am home now. Hemoglobin and hematocrit number are still low (9.5 and 28, normal is 12-16 and 30-35)but doctors confident my body can continue to make good cells. Wound Care specialist at hospital really helped me with my area, and I am 75% better in that regard. Still on low doses of oxycodone, but off morhphine. It was a bad experience, and one I hope no one else has to go through. But reading all the posts, we all have had our challenges during this cure. The bottom line is that we are cured, and if not, certainly in the process.
My next dilema is to determine whether I should finish out treatment, I have 3 radiation zaps to go before admitted in hospital. I really don't want to as I have already started the long road back, and don't want any backwards steps. I'm so scared of the pain coming back. Doctor said I reacted severely to radiation so wouldn't it be safe to say that my tumor did too? We meet tomarrow morning to discuss my plans. Any insights anyone?
Just glad to be home,
Darcee
(P.S. If anyone wants to read my blog in depth, I have a sight at Caring Bridge http-//www.caringbridge.org/visit/darceehosman
Please feel free to visit, I've been writing my story here from the beginning.)

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

Darcee
So sorry you have gone through all this....it sounds like an awful experience. I'm glad the wound pain is subsiding a little. I can't imagine how bad that was. I'm sure the tumor responded to the treatment and your first news of that will help you to put this horrible experience behind you step by step. I truly hope your healing has begun. Glad you are home and I pray that you will continue to improve.
Hugs,
Liz

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i am sooooo sorry that you had to go thru this. i had something similar. but was already in the hospital due to uncontrollable diarrhea and bld. pressure dropped out. my skin was blistered , turning almost black, bleeding and peeling off. all of my other private parts were swollen 5 times their size and i felt like i had something between my legs. i did finish my last 3 radiation tx on a hopital bed with all these iv's hanging as they wheeled me into the radiation room. it took a while but all the swollen parts did go down. but my anal tissue took a much longer time to heal and actually, i still have trouble with the left side even after 18 months past the end of tx. this stuff is unbelivable. no one could relate . i even had nurses come observe what my tissue looked like (which anyone could come look because i want them to learn how to help people with these horrific side effects.) i have no modesty anymore. modesty is what kept me from going to the ER when i really needed to in the very beginning of my troubles. you will heal up. bless you sephie

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

You are so right about the modesty issue. Everyone wanted to look and I was happy to show. The immediate response from those looking was a little body shake, and a startled "oooh". I wanted to say "hello, now you know why I'm crying". Yes, my skin first turned black, literally, blistered and peeled and bled, all leading up to the horrible open wound. Most painful thing I've ever gone through or most likely every will. No one but us will ever understand it. What a club to be a member of.

After coming home and researching neutropenic fever and low blood pressure (at one point mine was 50 over low 40 something) I realize now how much danger I actually was in. Glad I didn't know it at the time, and definitely glad its behind me. I still have to be careful of neutropenia as white cells are slowly climbing. I've been instructed to err on the side of caution and wear surgical mask when out. Next blood draw Wednesday so we'll see how I'm improving (notice I didn't say "if", we must maintain positive attitude along with lack of modesty - that's how we get through this).

mp327's picture
mp327
Posts: 2823
Joined: Jan 2010

I read your post and wanted to cry. It hurts me to think about what you've gone through. I burned pretty badly, but nothing in comparison to your experience. My heart goes out to you and please know that I will be keeping you in my thoughts and prayers for fast healing. As for not getting the last radiation treatments, you and your doctor must decide that. I've known other people who did not get the last 2 or 3 because of such severe side effects. So far, all of them are doing fine. Please let us know the plan and keep us posted on how you're doing.

Gulamin
Posts: 132
Joined: Dec 2010

You did it! So proud of you. What a road there... I am now officially scared. I have 8 radiation days left and am hoping for the best. Keep us posted and let's all hope we can celebrate soon... to be done.

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

Just because I reacted so severely doesn't mean that you will also. Remember my doctor said he had never seen a person with as severe radiation reaction as I. The chemo complications combined with the radiation complications, though quite a double whammy, isn't normal. So hang in there, you'll probably sail through.
I just had my meeting with Rad doc and discussed finishing treatment. He suggested that they modify the targeted field, and instead of hitting the groin and lumph nodes, just concentrate on the anus for the last 3 treatments. He told me to take some time to think about it, and if I wanted I could start up again on wednesday.
I cried. I literally don't know what to do. I don't want to face any more pain and he assures me that since I'm so far along in my wound recovery that this would be a minor setback to a very small area, nothing like what I've been through, yet I can't help but be nervous.
On the flip side, I don't want to have cancer anymore. period. To have come this far and then just quit, prior to finishing the advised protocol is a gamble I'm also scared to take. My gut reaction is to finish. With your support, all my meds, my wound care supplies, I think I could do it. But I admit, like you, I'm oficially scared. Hence, I cry.

mp327's picture
mp327
Posts: 2823
Joined: Jan 2010

mbh97766--

I know the thought of getting those last 3 treatments makes you shudder, but I think your doctor is making some very good points. Since you've had a bit of a break and some time to heal, the last 3 treatments are not likely to cause the damage that you have already experienced and you should recover pretty quickly. You want to be rid of this cancer. In my opinion, those last 3 treatments are just a little more insurance that it will be gone. That is just my opinion and the decision is yours, based on your gut feelings and the advice of your doctor. I hope you will know what is best for you and I wish you the very best.

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Darcee,
I am sorry you had to deal with your double whammy. Go with your gut.
Norma

Gulamin
Posts: 132
Joined: Dec 2010

Your body will know the answer... I think you do already know it too though it is hard to face... so much bad experience and the fear of what will happen after what you already been through. I would go for it, I think, just because we want this cancer to be gone gone gone! Forever. And it will... Keep us posted.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

the body is miraculous. and it heals---slower for some than others. i feel so sad that you need to make this choice but YOU CAN DO IT !!!!! perhaps , this time, you can take more pain meds (radiation should keep you from being constipated but if it doesn't use stool softeners and miralax- ) but i also understand totally that you are scared of pain and the healing process. you will make the right decision. hugs to you sephie

duckyann
Posts: 162
Joined: Jun 2009

Hi mbh97766,

I am so sorry for everything that you had to endure with this treatment and I am happy that you have over come it and are here to talk about it. I also had a very rough time with the chemo/radiation treatment. Not the same as what you went through but enough side effects that my oncologist actually told me at my 1 month check up post treatment that they thought they were going to lose me to the treatments. Here I am 19 months later.
I actually had diarrhea so bad that I lost 7 1/2 lbs on Memorial Day weekend. Nothing that I took imodium, lomotol (sp) helped or would stop it. I dehydrated so badly but luckily I did not get admitted. My doctor just had me in his office for about 9 hours pumping me up with fluids. They tested me for C-diff because my radiation doctor insisted that I had this bacteria which would of been extremely bad. My oncologist never thought I had it and I didn't Thank God! I ended up taking a week off from radiation treatments with my 8 boosts left. Believe me I was terrified to go back and re-live what I had already gone through. I have to say that much to my surprise I went back and did very well and was back to work 5 days after my treatments ended. I only put in 1/2 days at work but the point is I was well enough to go. No one can tell you what to do but I do believe that you will be fine if you finish your last 3 treatments. They will watch over you so closely.
I will keep you in my thoughts and prayers.

Nancy

grandma2selena's picture
grandma2selena
Posts: 199
Joined: Jun 2009

Sorry you had to go through this. I cried as I read your post. I know you and your doctor will make the right decision about the last three radiation treatments. I know at the end of mine, they gave me some extra zaps, powerful ones. I made it through part of them but when I developed a kidney infection and was getting so weak, I decided no more, but for me the extra zaps were basically just to make sure we had it all. I feel fully that we did get it all with the normal treatment and what the radiation doctor was feeling was the scar tissue that I still live with, he just wanted to be on the safe side. Anyway I am so sorry you had such a bad reaction. Hang in there you will know what is best for you!

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