MO appt yesterday, was physically checked out - big decision
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camul
Member Posts: 2,537
Yesterday, had my bi-weekly appointment with my onco. After checking tenderness in abdomen and bones, as well as another UTI, was told it may be time to consider stopping chemo all together. He said it is my decision, my physical condition shows that the chemo does not appear to be working on my bones and getting another UTI so fast, my immune system is pretty comprimised. He agrees I need to go on the patches to even out the pain control. So this I will be starting on the 9th of August.
2 months ago I would have jumped right on this, but after my break, I came back ready to fight this with everything in me. I told him I had to think about all of this and talk to my boys to get their input. I went ahead and had my treatment and talked to my nurse the whole time. I had a million questions and she helped me with so much.
1. Avistan == Her take was he would probably go for it along with what I am already on.
2. To do an MRI on Spine, Left Hip, Pelvic area, and CT on my chest.
Anything else that anyone can think of that I may be missing?
I was under the impression that it had to totally involve my liver, brain, or lungs, to get to this point. He explained with the amount of cancer through my bones and connective tissue, and my immune system suppressed I am getting almost constant UTI's, and my body is requireing more bed rest and getting around in a wheelchair. I said then I will walk more, and he said the bone cancer and pain is not allowing this and my body is requiring the sleep to fight the cancer. He said we will be seeing pnemonia next. The chemo has been effective in keeping the cancer stable in the liver, but it is continuing to grow in the bones.
Next week I just have Herceptin, so I should be able to have the scans and MRI before the following week which would be week 1 of the second cycle of this round, I may have to go to Thursdays for treatment for a month, but that is doable. I agree that if the chemo is not working, there is no reason to continue, but if there is another one, then I am willing...
I don't know what to do! We all know what no chemo means.
My Doctor asked me what was on the top of my bucket list? Told him New York Yankees and/or an Alaskin or East Coast cruise, he said he would work chemo around it but to do it now if I am serious about this.
I think I am going to Email him and have him set up the scans for 2 weeks so I know where I am physically and can put a plan in place... I don't think I slept all night, my brain is just going in circles.
Hugs to all,
Carol
2 months ago I would have jumped right on this, but after my break, I came back ready to fight this with everything in me. I told him I had to think about all of this and talk to my boys to get their input. I went ahead and had my treatment and talked to my nurse the whole time. I had a million questions and she helped me with so much.
1. Avistan == Her take was he would probably go for it along with what I am already on.
2. To do an MRI on Spine, Left Hip, Pelvic area, and CT on my chest.
Anything else that anyone can think of that I may be missing?
I was under the impression that it had to totally involve my liver, brain, or lungs, to get to this point. He explained with the amount of cancer through my bones and connective tissue, and my immune system suppressed I am getting almost constant UTI's, and my body is requireing more bed rest and getting around in a wheelchair. I said then I will walk more, and he said the bone cancer and pain is not allowing this and my body is requiring the sleep to fight the cancer. He said we will be seeing pnemonia next. The chemo has been effective in keeping the cancer stable in the liver, but it is continuing to grow in the bones.
Next week I just have Herceptin, so I should be able to have the scans and MRI before the following week which would be week 1 of the second cycle of this round, I may have to go to Thursdays for treatment for a month, but that is doable. I agree that if the chemo is not working, there is no reason to continue, but if there is another one, then I am willing...
I don't know what to do! We all know what no chemo means.
My Doctor asked me what was on the top of my bucket list? Told him New York Yankees and/or an Alaskin or East Coast cruise, he said he would work chemo around it but to do it now if I am serious about this.
I think I am going to Email him and have him set up the scans for 2 weeks so I know where I am physically and can put a plan in place... I don't think I slept all night, my brain is just going in circles.
Hugs to all,
Carol
0
Comments
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Carol...
PLEASE ask to try the AVASTIN...I'm sure you've read my posts about it...my feeling is at this tme it could only help and not hurt. And certainly worth a try.... again I don't have bone mets....only you can make the decision along with your oncologist....I pray the pain patches will gve you relief.....
Keep us poste...we care so very much
Hugs, Nancy0 -
Carol I am sorry tha you to make decisions like this one
Carol
I will pm you later today, however please discuss three other options
Two are oral pills
Xeloda Chemo
Other two hormonal has been approved for post menopausal only
Faslode monthly shots
Recently approved drug Afinitor pill along with Aromotisin
I think that just administration of any of these three choices is much easier for body and can safe energy and provide better quality off life than traditional IV.
Hugs0 -
Carol,New Flower said:Carol I am sorry tha you to make decisions like this one
Carol
I will pm you later today, however please discuss three other options
Two are oral pills
Xeloda Chemo
Other two hormonal has been approved for post menopausal only
Faslode monthly shots
Recently approved drug Afinitor pill along with Aromotisin
I think that just administration of any of these three choices is much easier for body and can safe energy and provide better quality off life than traditional IV.
Hugs
I am so sorry to hear
Carol,
I am so sorry to hear this news. These must be such difficult decisions to make. I can't imagine how I would react to this. My prayers and kind thoughts are coming your way. Gentle cyber hugs to you.
Stef0 -
NancyMAJW said:Carol...
PLEASE ask to try the AVASTIN...I'm sure you've read my posts about it...my feeling is at this tme it could only help and not hurt. And certainly worth a try.... again I don't have bone mets....only you can make the decision along with your oncologist....I pray the pain patches will gve you relief.....
Keep us poste...we care so very much
Hugs, Nancy
I have and that is why I am checking into it. I too am hoping that with the pain patch, I will get more relief. The chemo's are just not getting to the bones, and my body is getting weaker. I knew this would come, however, until I came to it, I would think about it but as though it was about someone else. I am not giving up, but if it is proven that chemo is no longer affecting and my body is no longer accepting it, then there is no point. Then I will look at quality, because there sure has not been much of it (other than on the break) in the last few months. But tomorrow I will be emailing my Dr. to get the scans set up.
If it wasn't in almost every bone, it would be easier. My boys will support and be a part of whatever decision is made. We are looking at my list and trying to decide on where to go and what to do. Today, I am even looking at Hawaii or a cruise. If my time is limited we will enjoy every minute that we can!0 -
How much chemo can a body tolerate?fauxma said:Carol,
I am so sorry to hear
Carol,
I am so sorry to hear this news. These must be such difficult decisions to make. I can't imagine how I would react to this. My prayers and kind thoughts are coming your way. Gentle cyber hugs to you.
Stef
If you switch to something else - or add avastin, how much more can your body tolerate and how will you know when enough is enough and/or the toll of the chemo is too much? Didn't you "recover" somewhat on your break? I suppose your MO is saying if you were to develop pneumonia that your body would be too weak to survive it?
Dear Carol, I have no idea what I would do if I were in your position, but I know this - whatever you decide you have my love, support and prayers. You have experienced so much on this journey of yours, and I'm honored to be a part of it.
Suzanne0 -
Carol--These are such tough decisions to makeDouble Whammy said:How much chemo can a body tolerate?
If you switch to something else - or add avastin, how much more can your body tolerate and how will you know when enough is enough and/or the toll of the chemo is too much? Didn't you "recover" somewhat on your break? I suppose your MO is saying if you were to develop pneumonia that your body would be too weak to survive it?
Dear Carol, I have no idea what I would do if I were in your position, but I know this - whatever you decide you have my love, support and prayers. You have experienced so much on this journey of yours, and I'm honored to be a part of it.
Suzanne
On the one hand, who needs to suffer by taking some chemo that is no longer working. On the other, what if some other therapy you haven't yet tried (and I know you've tried a ton) could be your miracle. As you and others have said--only you can make your decision. Sometimes that's a good thing, but sometimes it would be so nice to have someone else tell you exactly what to do with certainty and clarity.
We are all with you 200%, Carol, in your decision, in sending positive energy every single day and in our prayers.
You are one of the strongest, most courageous people I've seen on this board in a long time--and we have had many. You are in my nightly prayers and will continue to be. Hoping the pain meds do a very good job.
Gentle hugs, Renee0 -
Oh Carol, my heart just
Oh Carol, my heart just dropped. I've started and erased many times...I just don't know how to express everything churning in my heart right now.
The one thing that keeps surfacing is how calm and methodical you seem. You are once again showing me how to handle this stage IV mess with grace, courage, and conviction. I very much admire you. I love that you will not make this decision without your sons, and I love that you aren't giving up at the same time. I love that whatever you decide, you have already decided to keep living life to the fullest...you are one powerful woman.
I'm sending prayers for wisdom and peace for you.
Hugs,
Linda0 -
SpeechlessAMomNETN said:So Sad
Carol,
I'm so sorry to read your post. Make those plans since your MO will work with you. I'm so glad your family is so supportive. You are in my prayers.
Janie
Oh Carol, I can't think of the right words to say. I can only imagine what you are going through. It would be so much easier if someone would just make the decision for you, but you have to do what is right for you. I'm so glad you have the support of your sons. They sound as amazing as thier mom!
Your courage is such an inspiration. As Linda said, I'm happy that you have decided to live life to the fullest. I've been to Hawaii and it was incredible!
God Bless you Carol, you are a very special in all of our hearts.
Extra Hugs and Prayers, Debi0 -
Carol... Carol...
I don't know where to begin. You have been through so much and still stand strong. I look to You for strength all the time. You are one of best and dearest friends. I wish there was something I could do to make your fight easier. We pray to God for You every day. I will be in touch.
Love and Hugs with ton of Prayers,
Diana0 -
I have no words
.... I am speechless.
My tears fall softly upon my face as I read your words.
One has to wonder what God's plan is. Honestly, my heart just aches. It hurts. I wish I could do something for you.
The one bright spot I read about in your post is that your boys are there for you. I am so proud of them and so proud of their mom. You taught them well. I hope you go to Hawaii and enjoy the wonder that Hawaii is.
My head keeps saying "Don't give up" and I know that you won't. Have you talked to the doctors about stem cell therapy? I know this is something that is going on in Europe. Just a thought.
From my home to yours, I send lots of love and positive thoughts.
Love you and those boys.
Mary0 -
Carol, you are so
Carol, you are so amazing--you are handling so much with grace, poise and wisdom. I am so very sorry for your news. Whatever you decide, please know that we are behind you 100%. Praying hard for you tonight.0 -
That would be so much easier if someone else could tell me what to do. One of my sister's still thinks there is going to be a big miracle. I feel so bad for her. I love all the support on this board. I have a little time to decide, and to tie up some loose ends. As supportive as my boys are, this is killing them. We are so thankful for the extra time, but I don't think any amount of time would be enough.missrenee said:Carol--These are such tough decisions to make
On the one hand, who needs to suffer by taking some chemo that is no longer working. On the other, what if some other therapy you haven't yet tried (and I know you've tried a ton) could be your miracle. As you and others have said--only you can make your decision. Sometimes that's a good thing, but sometimes it would be so nice to have someone else tell you exactly what to do with certainty and clarity.
We are all with you 200%, Carol, in your decision, in sending positive energy every single day and in our prayers.
You are one of the strongest, most courageous people I've seen on this board in a long time--and we have had many. You are in my nightly prayers and will continue to be. Hoping the pain meds do a very good job.
Gentle hugs, Renee
Hope you are keeping out of all the sand, saw pictures of the horrible sand storm the other day!
Hugs to you and all you are going through! This whole cancer thing is ****!
Carol0 -
Your decision
Carol, whatever you decide to do, I'm sure it will be the right decision for you. Try to think only of yourself now even though I know that you rarely do that. You are so strong and have such grace under pressure. I hope that you find peace and tranquility in your decision.
Best,
Clementine0 -
Ask
Ask your oncologist what he or she would do in your situation. Then get another opinion and ask the same question. I don't know what I would do in the same situation. I remember when my mom (she died of lung cancer at 80..big difference for sure)saw her onco and he said the chemo was not as successful as he wanted and she could try more or quit and enjoy her days. It was July, she said she wanted to keep going, of course we didn't want her to go through anymore as the chemo took so much out of her at her age. We wanted her to be able to enjoy the kids, grandkids and great grandkids as much as possible, and that was why she wanted to fight more, so she could enjoy them longer. So we asked the onc the question, what would you do if this was your mom? He said he would take her home and enjoy her for as long as God let her stay. When mom said she wanted another Thanksgiving, he told her she would be enjoying it in heaven, with or without the chemo. She died in October (We did have Thanksgiving with all of her family brother and his family included on Labor day that year) but that day in the onc office will stay with me forever. I wonder if we should have let her try the chemo? Would it have given her another month, or six? Or would it have taken her sooner because she was weak? So you see my point is we actually made the decision for her, but now I am left here wondering. So who knows what decision is the right decision? Ask questions, then make the best choice you and the boys can live with. Again, my mom was 80 and had lived a very full life, but she raised us on her own, my dad died when she was only 33, and she never remarried. We were her life. She was pissed and did not want to let go of us..lol such a strong woman! A real fighter. None of us are promised tomorrow I know. I will pray that God give you the piece of mind you need at this time to help guide you. I am sending hugs as well... take care.0 -
Sorry to hear
Carol... I read your post yesterday, but couldn't respond because I was at a complete loss for words and felt utterly numb. My heart goes out to you and your sons. It is a difficult decision to make. Whatever you decide to do, we will support fully. I pray God grant you and your family peace of mind and heart.
Big hugs to you and yours.
Ines0 -
Carol...Bella Luna said:Sorry to hear
Carol... I read your post yesterday, but couldn't respond because I was at a complete loss for words and felt utterly numb. My heart goes out to you and your sons. It is a difficult decision to make. Whatever you decide to do, we will support fully. I pray God grant you and your family peace of mind and heart.
Big hugs to you and yours.
Ines
Just wanted you to know, again, that you are on my mind and in my prayers...
Hugs, Nancy0 -
There are no words or magic fixesMAJW said:Carol...
Just wanted you to know, again, that you are on my mind and in my prayers...
Hugs, Nancy
I'm carrying you and your boys close to my heart as you take the next right step and the next and the next.
Love, Victoria0 -
Will keep you in my prayers!aisling8 said:There are no words or magic fixes
I'm carrying you and your boys close to my heart as you take the next right step and the next and the next.
Love, Victoria
You are so strong! My heart aches to hear this news but you're right to ask around and see what else might be out there. My husband's cousin is in a similar situation and whatever she's getting is fairly new and brought tumor markers down initially. They haven't dropped much lately but she's sticking it out to see what happens. Each one of us has to make our own decisions but know that you are held in prayer - healing, peace, wisdom.
Blessings my friend!0
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