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Mom waiting for chemo to start - very sick - is this normal

me_and_my_mom
Posts: 44
Joined: Dec 2012

My mother was dx last week. We are still waiting final biopsy results, they won't start tx until they recieve it. It has been 10 days since tenative dx. She is sooooo uncomfortable, w/ nausea, and now pain, and seems very weak (maybe the pain meds?). SHe is so bad, I am afraid she is going to die before she even begins chemo. Would the doctors tell me if she was at that point? They seem sympathetic, though not alarmed. Is it normal for her to feel this badly while waiting for results and chemo? I am trying to work, and to save my time off for when she really needs me - but I don't know what is going on.

kikz's picture
kikz
Posts: 1275
Joined: Jun 2010

but I was wheeled in to my first chemo. I was so weak I couldn't walk on my own. I was mildly ill when I went to my primary doctor with my initial symptoms. Within two weeks I was very ill and had ascites. I was scheduled for a ct scan and within hours received the news that changed my life forever.

I had my first chemo a month after I saw my primary. My health deteriorated greatly in that month Chemo took away all the ascites which was such a relief. At 62 years of age I looked about seven months pregnant and was as uncomfortable as I remember when I actually was pregnant many years ago.

I am sure your mom will feel better once she begans treatment. I wish you both the best. This is a difficult experience for all concerned.

Karen

me_and_my_mom
Posts: 44
Joined: Dec 2012

this sounds similar to what my mom is going through now. She is just deteriorating like crazy, while we wait and wait. I can't imaging why that can't just get her started now. How long should final biopsy results take? Isn't this an emergency? She is barely eating at all now - just sipping ensures. Her stomach is hugely distended, and they don't want to tap her for numerous reasons. How is she going to be able to withstand chemo? Maybe I should insist she go to the hospital for IV fluids, etc, while we wait? I'm sorry to dump all this on you - your respones have helped me more than you will ever know. It is the middle of the night,and I am wide awake with fear. What if I do what the doctors say, and it is all wrong? My instincts are screaming at me "do something, anything, right now, she can't wait".

MJensen
Posts: 93
Joined: Oct 2012

If you feel your mom is slipping away in front of you then you need to call the DR. Someone is on call I am sure and if not call first thing in the am. I was so bad one time from not eating or drinking during treatment I called the DR and basically asked him if I was at the end stage and was I ready for Hospice. He took me very seriously. He had me come in right away and they did blood work stat and I had to be admitted to the hospital for 5 days. No one was allowed in my room except immediate family and they had to wear a mask. Keep in mind I was going through chemo but I wasn't eating or drinking like I should so my electrolytes were all off, I needed magnesium, potassium, a blood transfusion , plasma infusion and I had to get white and red cell booster shots. The oncologist can have some blood work done and give her fluids thru an IV at the cancer center if need be. I hope you can get in touch with her DR tomorrow and explain everything you are feeling. Try to get some rest. You can ask her oncologist for some anti anxiety meds for you too. Lorazepam or Xanax may help. Take care and keep us posted!!!!!

Alexandra's picture
Alexandra
Posts: 1227
Joined: Jul 2012

When I was in the same situation waiting for my first chemo doctors refused to tap me for various reasons too. Told me that ascites should resolve with the chemo.
I argued and refused to leave doctor's office until they tapped me (1.7 liters). When ascites came back a week later, I returned and made them tap me again (3 liters). It made a huge difference in my quality of life. I was able to eat again and move around normally.

MJensen
Posts: 93
Joined: Oct 2012

I remember how horrible I felt. I was bed ridden mostly and it was painful to turn over. The ascities fluid is very hard to deal with. I thought your mom was seeing the Oncologist today?? Did her Oncologist see how sick she was and how horrible she felt? I am surprised they let her leave with no plan to start treatment and get it scheduled. Once your mom starts chemo it should attack the cancer quickly and even though there are some side effects she should start feeling better. The only other thing I can say is it is very important to be your own advocate and if your mom isn't up to the task then you will have to be her advocate. I have been very outspoken and pushy at times with my DRs. I knew my surgeon, Oncologist etc had many patients so I needed to speak up. I would ask the DR to get results STAT because I would make myself crazy if I had to wait for days. If I needed to see the DR right away I would call daily and ask if there were any cancellations etc. It is important for the DR to know how your mom is feeling physically and mentally so he can treat her accordingly. If she is in pain and anxious to get started on treatment then it is important for your Dr. to know this. If all else fails, you can take her to the ER. I am so sorry you and your mom are having to go through this and it is taking so long. Once they have a solid plan and it gets executed I am sure you will both feel so much better. Try to hang in there for her and make sure you keep her well hydrated. Please let us know how she is doing , what the plan is and how you are doing. It is always very tough on the primary caregiver. Positive thoughts and energy! <3 Michele

wholfmeister's picture
wholfmeister
Posts: 260
Joined: Dec 2012

I'm so sorry for what you and your mom are going through. It is so rough watching our moms suffer. But you need to be her rock now. As the other Teal Sisters have said, you need to be her advocate and politely bug the doctors until they really hear your concerns. Cancer sucks and it is so hard to be patient. I get upset if I don't feel like I am doing something every single day to fight it. I remember how eager I was to start chemo, and then to have my surgery. I am confidant that many of your Mom's symptoms will be relieved with the first chemo, as my severe pain was gone within just a couple days. You must keep her well-hydrated, and at the same time, don't let her get constipated. Daily Miralax is very gentle and effective. Please don't let your mind race off to the dark places of fear. Your mom needs you to be a rock of action. We are all here, all around the world, to hold you up. Sending much love your way.

me_and_my_mom
Posts: 44
Joined: Dec 2012

thank u all. I e-mailed her surgical onco because w/ all of my concerns, and this was her response to me:

Dear Carol,

I believe Dr Wade will initiate treatment shortly. I have seen patients this uncomfortable before starting treatment and improve as treatment gets underway. We are waiting for the pathology to be finalized but it does look like a type of ovarian cancer. It is aggressive and it is likely not a curable type of cancer. I am hopeful that we can get a response with chemotherapy though. Sometimes the tumor is more aggressive and chemo does not prove to be as effective as we would hope—at this point I am not sure which category mom will fall into. We will work hard together to manage her symptoms regardless.

Best,

Colleen

Not a curable type? does that not mean we might expect to see some remission? Chemo not effective? Is she trying to tell me there is no hope at all? Is this it? I am over the edge w/ this response. Is she just being brutally honest, or is she preparing me? Oh God, help me please.

Alexandra's picture
Alexandra
Posts: 1227
Joined: Jul 2012

Carol,

The doctor is NOT telling you that there is no hope.
She is telling you that all signs (ovarian mass, ascites) point to ovarian cancer.
They are waiting for pathology results to confirm the origin. Surgery will confirm stage.

The advanced disease is not curable, but can be managed for a while with chemo. Vast majority of women (over 80%) respond well to initial chemo. If your mom does not - doctors can try several other stronger chemo drugs. They will monitor her blood tests, marker CA125 should go down with chemo and when it is below 35, she will be considered NED (no evidence of disease)
Your mom CAN achieve remission after surgery and chemo. Recurrances are very likely but there
could be months or even years between them. You know it first hand if you are a 19 year survivor.

Good luck Carol and try to think positive for your mom's sake.

me_and_my_mom
Posts: 44
Joined: Dec 2012

Thank u. I'm so sorry, I feel like a blubbering idiot. I have times when I am strong, and times, like now, where I just fall to pieced. I just felt her (the oncologists) e-mail had a more ominous tone than my previous conversations with her. I did not think that she would be cured, I know she is advanced, I was hoping for management, for a long, long time. When he mentioned the possibility of it not responding well to chemo, I just about lost it. why would she put that in my head right now?
I am a survivor, but I had an immature terratoma - and it was stage one, one of the best types to have, and very curable. I have been very lucky. What I had and what my mom has are two different things completely. It is nothing like what I went through.

thank u so much for listening and taking the time to respond. It is hard for me to put the doctors words into perspective. This board has been a lifeline for me right now.

me_and_my_mom
Posts: 44
Joined: Dec 2012

Thank u. I'm so sorry, I feel like a blubbering idiot. I have times when I am strong, and times, like now, where I just fall to pieced. I just felt her (the oncologists) e-mail had a more ominous tone than my previous conversations with her. I did not think that she would be cured, I know she is advanced, I was hoping for management, for a long, long time. When he mentioned the possibility of it not responding well to chemo, I just about lost it. why would she put that in my head right now?
I am a survivor, but I had an immature terratoma - and it was stage one, one of the best types to have, and very curable. I have been very lucky. What I had and what my mom has are two different things completely. It is nothing like what I went through.

thank u so much for listening and taking the time to respond. It is hard for me to put the doctors words into perspective. This board has been a lifeline for me right now.

MJensen
Posts: 93
Joined: Oct 2012

I am sorry she was so blunt in your email response. It sounds like DR Wade is your moms Oncologist and will be the one in e drivers seat once treatment has started. I would get in contact with him today and tell him your fears and what the surgeon had to say. I was told my cancer was very aggressive and I asked my Oncologist for my odds of full remission. He said long term 20% and short term 70% and we will plan on long term for you. We were all hoping I would be in the 20%. I as many other women on this board have been battling for a year or more to knock down the cancer when it raises it's ugly head. Your mom may do really well on her chemo and surprise them all. No one knows until they start treatment. They will most likely start her on chemo and then after 3 or so treatments they will go in for a second look and debulking surgery.
I personally have a friend that was diagnosed 20 + years ago with a very aggressive cancer (breast) that had metastasized to many areas. They couldn't treat her here in Santa Barbara and had sent her down to the City of Hope where she went into seclusion and was basically taken to the brink of death with chemo. When she came home they thought she was in full remission. Then they discovered several lesions in her bone and put her on more chemo. She was a single parent of three small children. She had the same Oncologist I have. He tells me today she is his "miracle". She best all odds, they oblitereated her cancer which had metastiszed to many areas and is doing very well today. I will see her tonight at my Toys for Tot party. Cancer is a horrible devastating disease. It changes your life forever as well as your families. It is so hard on loved ones because you feel so helpless. All I can say is you both have to stay very positive and hopeful throughout this journey and road to recovery. You want your mom to feel better and get back some quality of life so you can share more good times with her. I think this is very possible and something you should both try to focus on. I personally would contact DR Wade today and you always have the option to change DRs if you don't feel confident your mom is in the best hands possible. Like the others have said.....you need to be your moms rock and stay positive. You can also stay on top of her DRs to get her started on somethingnto relieve her pain. You can ask them why they won't drain her ascities......I am so sorry you are going thru this but please dont lose hope and stay as positive asnyou can. Positive energy will help far more than you know.....please keepmus posted and take care of yourself too. We are all here for both of you!!!!!!

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

I am sure the doctor's e-mail was alarming, but most of the time, by the time women are diagnosed, they have ascites and it is uncomfortable. They also call OVCA a "chronic" condition because as you have probably read, there can be occurrences, but if you read some of the posts, you will see people have done very well on chemo. AND for some hope, the first blasts of chemo do an amazing job of melting away the cancer, and then they take it out. Surgeons do tend to be very direct, I hated my mother's surgeon when I first met him, and then he saved her...however, in the mean time, I would push for at least an appointment ASAP with the oncologist to start, as it will at least alleviate some anxiety.

me_and_my_mom
Posts: 44
Joined: Dec 2012

thank u all. I knew my mothers cancer was not 'curable', however I was upset at the way the onco said it, adding it's aggressive, and reminding me that not all cancers will respond to chemo. I don't think she meant to alarm me, and it was nothing I didn't already know, I just wondered if there were something about my mothers tumor specifically that made her say that. Do they know something they aren't telling me?
I have since talked to the nurse manager at my mothers med onco - and she made me feel soooo much better. She said that what the surgical onco said to me was generic, and in no way specific to my mom. She gave me hope and told me about patients, like so many on this board, that have come in very sick, and gotten so much better, and enjoyed good quality of life after this devasting dx.
Still waiting for biopsy results though. Something about cartlidge and staining? I don't know. It should be in by tomorrow, and they said they will start chemo next day, so that would be Saturday. Here's to Saturday - I can't wait for her tx to begin.

me_and_my_mom
Posts: 44
Joined: Dec 2012

thank u all. I knew my mothers cancer was not 'curable', however I was upset at the way the onco said it, adding it's aggressive, and reminding me that not all cancers will respond to chemo. I don't think she meant to alarm me, and it was nothing I didn't already know, I just wondered if there were something about my mothers tumor specifically that made her say that. Do they know something they aren't telling me?
I have since talked to the nurse manager at my mothers med onco - and she made me feel soooo much better. She said that what the surgical onco said to me was generic, and in no way specific to my mom. She gave me hope and told me about patient that have come in very sick, and gotten so much better, and enjoyed many, many years of quality of life after this devasting dx.
Still waiting for biopsy results though. Something about cartlidge and staining? I don't know. It should be in by tomorrow, and they said they will start chemo next day, so that would be Saturday. Here's to Saturday - I can't wait for her tx to begin.

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