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Ro, How are you?

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Ro, I am wondering how you are? I may have missed you last posts........

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I had my followw-up CAT scan and it showed that the fluid collection in my lower abdomen was smaller, but otherwise everything looked good. I thought that was wonderful news. So I guess I am dancing with NED, too. I had follow-up for my high blood sugars and it turned out to be good, too. It was all the steroids be fore the blood was drawn. My CA 125 dropped again. The cancer center changed who runs the CA 125, so last time they ran it from the old lab (which was 14)and the new lab (which was 23). This time it was 18 (their normal is less than 35), so I am happy with those results, too.

I am still working at getting back my energy. Some days are good, and then I have a really tired day. I am waiting for my hair and eyelashes to come back, too. These hats are getting old. I know it will come back in its own time.

I asked the onocologist what her recommended follow-up would be. She suggested lab work every 2 months and CAT scans every 3 months. But if the lab shows a change, than CAT scan sooner. So I will see her the end of October for lab work. I will see my gyn/onocologist in Florida beginning in November.

My only disappointment is my port still does not give them blood. I had a chest x-ray which showed the catheter is advanced too far. The onocologist wanted me to go back to the surgeon. The surgeon says as long as the port irrigates easily it is fine and can be used. Of course, none of the medical professionals will use the port if they cannot get a blood return. So I am waiting to see what the final decision is to get the port to be able to be used.

Hope all is well with you, Peggy, and Garth and Jo. In peace and caring. HUGS to you.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Dance on, Ro! Sounds like you will be closely monitored, and I hope that will give you peace of mind to enjoy your remission. Each day now you will feel a little stronger and more like your old self.

I kicked myself for not getting a port, midway in my chemo rounds, when my veins started giving me trouble with the many sticks I had to have with the transfusions and all of the extra blood draws when I had the delays in chemo when my counts were low. But when I hear port stories like yours, I am glad I didn't get a port. And my veins seem to have recovered, as they did the last CT-scan IV contrast and blood test draw with one stick each. (((Ro)))

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Ro,

Glad to hear you are doing good. My mustache came back before my eyebrows but the eyelashes and eyebrows do come in! They couldn't get blood from my port last time and did a variety of things including had me lay down on a bed; this worked very well. Have they tried that?

Diane

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Yes they have tried everything from raising my arm, laying on one side and then the other, laying flat, taking deep breathes and repeated flushings. The way the nurse explained it, the x-ray showed the tip of the catheter is in a smaller vein than it should be. When they pull back to get the blood the vein collapses and won't let the blood come back. I wonder if that is what the x-ray they took after they put the port in showed. The surgeon said he looked at the second x-ray and it looked fine to him. Did not hear anything from the onocologist last week, so I will call on Tuesday. I guess I will need to see a different surgeon. The onocologist was checking with an interventional radiologist to see if they could pull the catheter back without doing another surgery. But if they don't stabilize the catheter, what will keep it from migrating again.

I never did lose my eyebrows, which I am thankful for. I don't think I would have been very good at drawing them on.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

After several phone calls to the onocologist office, the nurse called back about my port. I will see an interventional radiologist on Tuesday afternoon. He said it should be no problem to pull the catheter back to where it should be in the larger vein. I asked if he would stitch it in place and the nurse said she thought he would. I guess I will find out when I talk to the radiologist. I just want the port to be able to be used for blood draws and CAT scans. It is not supposed to be surgery, so I guess they will just numb the area. Not really looking forward to the procedure, but do want to be able to use the port.

Hope all is well with everyone. In peace and caring. HUGS to all.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

When you go to I.R. for procedures like yours, they are able to give you conscious sedation to help. A pain med through your IV (maybe a new IV in your arm) like morphine or dilaudid and a sedation like versed or valium. They can give you little doses at a time until you are quite comfortable. Speak up and be honest about how you are feeling ie. pain or anxiety. They won't know unless you tell them. Good Luck.
Deb

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I was hoping they could do the conscious sedation with the medications. That will make the procedure much more tolerable. When they drained my abscess in my abdomen this summer they just used Lidocaine, and I was hoping for Versed and some other medication. I am sure they will need to start an IV in my arm since they will be adjusting the port. Hope all is well with you, Deb.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

I'm curious how did you get abscess in your abdomen? Was it from chemo side effect?
Hopefully your port will be adjusted which shouldn't be difficult which I had just for about 30 mins. for having them to put the port on my right upper chest with sedations. Let me know how it goes. smile

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

No one is sure where the abscess in my lower abdomen came from. One thought is that when I had the robotic surgery in January they nicked to bowel and the abscess formed. But I did not have any problems with it until June. I don't know if my immune system was good enough to fight off the infection until my white blood cells dropped from chemo number 4.

Another thought was the radiation therapy did something to one of the lymph nodes and caused the abscess. I had 28 external treatments and one internal treatment before I had chemo #4. Another thought was a urinary tract infection, but I had not urinary symptoms. They said the only was to know for sure would be to do surgery and open my up and see where the infectious track went. I did not care to have that done.

They drained the abscess and it grew e-coli. I was on IV antibiotics for a week in the hospital and then took pills for 10 days at home.

I hope that you are finished with your antibiotics and are feeling better. Hope all is going well with your teaching, too. Take care of yourself.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

Thanks for telling me how it happened. I was interesting what you have been going through which I know it's no fun. I felt it's not what we expected it to happened. I had intestine inflammation filled with colon infection just few days after first Chemo started. My immune system dropped real fast when I had the infection. I stayed in the hospital for a week with IV antibiotics. After that I was getting better but still having fevers that I never knew that I had abscess when I had ct scan results just before my 2nd chemo due. They decided not for me to have second chemo until my stomach heals from infection and get the drain out the remain of the liquid from abscess. I've had IV antibiotics at home for one month. Right now I'm feeling back to normal now. It's strange for me to feel I'm not having any more chemo after what happened to my stomach infection.

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