Heidi

Im sorry to hear your mother had a bad reaction to the chemo. It is so difficult to see someone go through this. As I've mentioned, our scenarios are quite similar. Maybe she can build her strength up again and try another option. You mentioned Erbitux before....is that still an option? Also, keep pushing for clinical trials or other options if that is what yor mother wants of course. It's all up to her. Make sure to take care of yourself too. I hope moms doing better!!!

Thanks ConcernedDaughter

Seems like after a week in the hospital mom seems to be feeling a little better. Getting IV fluids and special wound care helped her a lot.
Every time she takes a treatment she gets severe Mucositis. She also gets some swelling and it stops her from swallowing.

She is now back eating soups and straw sipping. She will take another treatment next week. I think the doctor said after this third treatment of Carbo/Doctaxel he will take a scan to see if there is any good results. If the results are not good we will not waste time to move on to something else.

I wont let my mom give up .
I told my mom It aint over till the fat lady sings.

Heidi

How is she doing now? Hugs

Hi Cheryld

My mom gets good days and bad days. The IV fluids seem to help her a lot after she takes a treatment.

At this point I am worried about the open wound on her neck. The only way this wound will heal some is for the chemo to work. Its called a Ulcerating cancer wound. The doctors are looking into what the next treatment will be. Possible Electro chemotherapy.

Heidi

Hi Heidi

How are you and your mom doing? Any update on the next steps? I read a lot about electro chemotherapy and it's had some great results, especially in the UK. It is considered palliative although I'm not sure why. It has quite a high success rate. Maybe it's to keep cancer at bay? Not sure. If you learn about it please let me know. I've been meaning to ask my dads MO about it just to have in the back burner just in case but I don't want to cause anxiety in my dad by talking about other treatments. Last week our hospital sent the original rumors out for research to see which treatments and drugs it may respond to. Is this something your hospital offers? Might be worth asking about.

I'm hoping your mom is doing well. You mentioned a scan...has that happened yet? Hope things are stable! My dad had a break from chemo last week because his rash was so bad he was placed on antibiotics but they say an Erbitux rash is good news so can't be disappointed there. His counts were starting to drop so they said skip a week until they go up and his rash can get better. Prayers and well wishes for you and your mom!

Hi ConcerenedDaughter

My mom took her third treatment of Carbo/Taxel a week ago. A scan is being scheduled before the forth treatment to see if its working. No sense to waste time if its not working and move on to something else. Another appointment is scheduled at MDA on March 25. I'm not sure if my mother is going to keep this appt. She may be to sick to make the trip.

New problems and I don't like what I see. This open wound rite below her jaw is as round as quarter. This is caused from the cancer. This may sound gross but what's happening now is what ever drink she sips on we are seeing on the bandage on the wound. I'm totally in shock by this. What is happening here. This is not good. I bring her to the doctor and were told there is a communication problem. I'm like Ooook. What do you mean a communication problem. Well I think the doctor just didn't want to explain what is really going on here. I think the cancer may have spread to the esophagus . I just don't know. Were could this leakage of her food and drink be coming from that some of it is going trough her neck. This is weird and serious.

We have an appt. with a special wound care doctor in the morning. I will see what his opinion is. I'm getting really worried now. This is not good at all.

Prayers
Heidi

Your mother sounds very sick indeed Heidi. I'm so sorry to hear this and hope the wound control doctor can help you tomorrow.

Love
Maureen

Heidi, you really need a sit down with the care team, including a social worker or Oncology Psychiatrist. With all that is going on you must not accept a "communication problem". This usually means someone is communicating from one side or another and the other side isn't engaging in the discussion. I hate what,you and your mother are going through. I cannot imagine how difficult this must be for you and your mother, but not resolving this communication is only postponing things that need clarification. Demand a conference call with the care team if you can't make it to MDA.

Uptown

The oncologist didn't mean a communication problem between any conversation such as understanding each other. When I explained what was happening with this open wound he briefly examined my mother and said you have a communication problem going on here. I asked what do you mean and he repeated she has a communication problem. Well I ask Is something in her throat not working properly ? I don't understand. He didn't give me an explanation. I called today and talked to his nurse she is suppose to call me in the morning to explain what he is talking about. I asked her did he mean the cancer is causing this and she says oh no not at all. Well I say what does he mean and it needs to be addressed. I will get this straight in the morning for sure.

Egan Home Health has been coming to the house for home health and wound care but I am not satisfied at all with the services. In the past four weeks the nurses haven't even come with any wound care products. Not even as much as a piece of gauze or band aid. I was being told supplies were ordered over and over. I was going out and buying what I could but I'm sure it was not the correct materials that should be used.
I called and canceled there service.

This morning my mom met with a very good wound care specialist. He is recommending Hyperbaric Oxygen treatments. I know it may not be good as far as the cancer goes but the specialist said "Its 6 in one hand and half a dozen in the other" at this point. She just cannot stay in this condition. This wound care doctor is going to speak to Oncologist and discuss what he recommends. The wound care doctor is also making arrangements for a new Home Health company to come to the house.

A scan is also being scheduled to see if there is any success with the treatments. If not then there is no sense in going any further with this route . Hopefully MDA will recommend what treatment if anything can be done. MDA did say if she shows any progress with the current treatment then she may be able to do a clinical trial going on but she must show a sign of the cancer responding before that can happen.

Thanks
Heidi

Heidi and Uptown I now think I can see what the doctor meant by a communication problem. But he should have explained it! I remember a young surgeon who helped with my surgery saying that he didn't want any "communication" between the inside of my mouth and the outside. He was referring to the stitches I had on my chin. There were some in the skin on the outside and I assume some in the mucosa on the inside. I was begging for a drink but he said the drink could interfere with the healing of the wound and cause a hole in my chin wound.

Hard to believe a doctor would not explain that, however, and I agree with Uptown that there needs to be a family conference with doctors, caregiver, nurses so that things are a lot clearer.

So glad the wound specialist has suggested something that might help and that you have a new nursing service to help you, Heidi.