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Thinking of stopping at 3 instead of 4 chemo treatments.

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

I am on day 7 of my 3rd treatment and my M.S. and M.G. is taking a big hit. Bladder, bowels, M.S. Hug that feels like I am being strangled at my diaphragm. Spasms so strong that I can't tolerate to stand, sit or lay down without extreme  pain.

And to think I may be in a flare that is permeant really is to much for me to stand. The fatique is unrelenting and I have to be propped up just to be able to sit straight up. 

My swallowing and breathing is weak. It feels like my M.G. acting up. I'm afraid I'm going to lose my swallowing ability again. I still use my feeding tube for liquids but I don't ever want to lose the ability to be able to enjoy eating food again or swallowing my saliva.

Sorry about the venting... I just have to weight my options about the risks of continuing the chemo another round or ending up wheelchair bound and relying on a feeding tube to survive along with the needed help in my care.

 

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

What a hand you've been dealt.  Wish there was an easy answer.  Like you've said, you have to consider the pros and cons and I'm sure you'll discuss this iwth your physicins, too.  I wonder if they even have a clue about what's going on with you or what potential long term effects might be in your case. 

Just sending my hugs from my heart.  My mother had MS, an uncle (her brother) had MG.  I can't imagine having both AND then also dealing with cancer.

Best wishes for you and your decisions -

Suzanne

Kathy G.'s picture
Kathy G.
Posts: 214
Joined: Dec 2012

Annabella,

My heart goes out to you. Your poor body has really taking a beating! And of course that affects your mind & soul.

I will pray you can make a decision about how to progress with treatment that will not be agonizing to make. You have enough on your plate.

Kathy

nempark
Posts: 683
Joined: Apr 2010

Only you alone Annabella can make that decision.  I wish I can give you some little solution.  All I can say is to try your best to be calm and know that you are not alone.  I send you my best wishes.

Hilajoan's picture
Hilajoan
Posts: 21
Joined: Nov 2011

Have you told your medical team, the nurses at chemo centre, etc.?  You must.   Please Email them what you've sent here to the group.  You can't tolerate being poisoned, too.  You are really having extreme reactions - I've never had anything like that.  Wish you really well again soon.  Joan 

 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I agree wholeheartedly with Joan. Please tell your doctor about your suffering. Recently, I went to a meeting in which my gyn. oncologist talked about how important quality of life is . I agree. I have come to the decision that I will not allow my life to be gradually destroyed by continual " cancer treatment". I put this in quotes because I think cancer treatment is primative and not with a high success rate . I have made peace with the likelihood that uterine cancer will kill me. In the  mean time, I will live , live, live! I suggest we all do just that!

 

Hugs to you , Annabella Rose,

Cathy

molimoli
Posts: 514
Joined: Aug 2014

Hi Cathy and all my other sisters ,I sometimes stop in on the board  but had nothing new to tell so I kept quiet while i waited on results and  discussions, They are all in to my doctor now so I will update Tuesday night. I couldn't help saying hello as the subject being disected,[  chemo or no chemo]  is what drives many people to sleeping pills,  some even to psychiatric  wards.

 

Cathy you said it, INFORMED DECISION, I so want to give you a hug .I have a strange feeling that you and I will meet  somewhere , some how ,some time . NUFF  LOVE.

To all my sisters I wish you improved health and most of all peace of mind.  Coming to terms with the reality of this beast  affords you a certain peace of mind and with it comes a desire to LIVE really LIVE now.  Self pity, anger, disappointment  and frustration just gets in our way and handcuff  our existence,   when these  four calls out my name  as they sometimes do I say out loud  NOT TODAY SORROW ,NOT TODAY.today I  am LIVING.

 

I have read all of your stories and i am happy to have met you, the circumstances sucks but the company we keep sustains me. Thank you , a special thank you to the people that kept this alive after Linda's passing. You must have Known we were coming  'round  the bend. Thanks for keeping the lamp burning for us. we needed you.

                                                                                          NUFF NUFF LOVE.

                                                                                           Molimoli

 

 

 

 

JackieZ's picture
JackieZ
Posts: 20
Joined: Mar 2015

I just finished with the 3rd round a few weeks ago-I really know how you feel-since getting the radiation and now chemo and no MS meds I too have had spasums and everything your dealing with-the avastin was suppose to be on the 1st but I lost so much weight am down to 88 lbs from being sick for the past 2 weeks. They said I could -my choice was to not have the avastin this time so I could get an appitte back and eat for 2 weeks before I start treatment 4. Maybe your docs can let you or adjust your meds to not be so strong or  like in my case skip this one medicine just this one time.but I have gotten it already in April when I got the other ones. I get a PET scane again before the 4th treatment to see if all these meds have done some good or what going on in there. I know there working or I wouldn't be so sick all the time-thats my thinking anyway. Hope you can pray about it-god knows the right way to go. Bless you and your decisions you make

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

I went for my doctors appointment today. I told him how hard it was to recover from the last treatment. Not only was it harder with the M.S. and M.G. But the side effects lasted so much longer. I was afraid I was going into a big flare and may not come out of it.

The Doctor said he understood. He said he was happy that I was able to handle 3 treatments. He wasen't sure if I was going to be able to even get that far but if we didn't try we would have never known.

I asked him if by not finishing the 4th treatment if that increases the chance of a reacurence of the cancer. He said that only God knows that answer. I agree with him about that!

I will be starting internal radiation soon. They are suppose to call me to set up my appointment with that.

After the radiation then I am going to get a pet scan and blood work then see him, the oncolgest, for check up and follow up. Then check up every three months and pet scan every 6 months.

As you know, with the M.S. , we need to Not to stress. That is something I am leaning on God for. With God All Things Are Possible.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Glad you made your decision, and can move forward with that decision.  Your doctor is right that only God knows if you will recur sooner with only 3 treatments.  You are listening to your body and that is important with your underlying MS and MG.  I hope the radiation is easier on your body.

I checked out your beautiful paintings.  You definitely have a gift.  I hope you can resume your painting.  That has to be a passion for you to be able to paint.   I hope each day gets a little better for you.  In peace and caring.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

i am so sorry you are having such a rough time with your chemo.  It has to be very scary with your breathing and swallowing being weaker.  I thought maybe the extra steroids would help you.

good luck in weighing your options.  I hope your doctors can lead you in the right direction.  You remain in my thoughts and prayers.  in peace and caring.

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

My 4th treatment is a week from today. I'm still not sure what to do.

I called my oncolgest yesterday to set up a appointment to go over my issues and options. The nurse told me to just come in next Tuesday, the day of my scheduled appointment for my checkup and chemo day and talk to him then.

I figure that will be fine since it will give me another week to see how I'm feeling. If I start pulling out of this flare or bad side effects or not.

I feel a little better then I did last week when I wrote this post but still not up to what I was hoping for at this point out from my last chemo day.

I was reading how the carbo chemo works and I think that's the one making my neurological issues worse. And from what I read with each treatment it most likely will make the side effects last longer. There is of course no guarantee that after I am done with the treatments that my central nervous system will be able to recoup. 

I fear the next treatment will be the straw that breaks the camels back.

I also wonder where these doctors come up with their percentages and numbers on how many treatments each patient needs to make those percentages real. Again, nothing is guanteed. Nothing in this life is.

I do want to get back some of my old self back. My hope is that I will. 

I am an artist but since this cancer showed up in my life I haven't had the strength mentally or physically to do anything creative.

I don't want to live my life in fear of, if the cancer is coming back, when, where. I need to focus on getting back to before this cancer took over.

If anyone is interested in seeing my artwork, this is my website address.

http://www.zhibit.org/josievullogrimaldi 

I will keep you posted on how my appointment goes with the oncolgest next week.

Thank you all for your support!

 

nempark
Posts: 683
Joined: Apr 2010

Dearest Annabella, I checked out your website and it is just amazing.  I had a very bad experience with my daughter and chemo she was dx with Leukemia and had the same problem as you are having with choosing whether she should continue or not. It is only you can make that decision and sometimes your gut feeling may be the right decision.  Pray and pray and ask God for wisdom to make the right decision.  Sometimes, medicine can do more harm than good.  See your Doctor and hears what he says.  Remember, they do not know everything.  I am rambling on because I can only imagine how you are feeling.

You are such a great artist, I really hope you can focus in the moment and get back to painting.  When my daughter was sick I crafted some nights until morning broke. That helped me to keep my mind off her illness.  Looking back I can tell you that chemo did her in.(not to scare you) Me on the other hand did extremely with Chemo. So I really think the bottom line is that you have to make the decision. Hope I made some sense here Annabella, my heart hurts for you because I know how you are feeling ( I really know, I have been there TWICE).  Love and big hugs and please start painting maybe during your painting you will come up with the right decision and find comfort and peace.  

Fayard's picture
Fayard
Posts: 436
Joined: May 2011







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Your art work is beautiful!

I am praying for you, so your mind and soul will guide you to make the best decision for you, the one who is going through this battle.

When I was having chemo, I took a power called L-Glutamine, which either protects you nerve system or helps it to recover from chemo. I also had carbo along with taxol, 18 treatments total. I must say I did not have side effects during treatment. The side effects came after. Even my butt hurt after I was done with chemo. I had to hold on tight to sit and get up, I could not walk but at the pace of a child. I had to do physical therapy for 3 months. Little by little I regained my strength and the pain went away slowly. Almost 4 years later, I still have pain on my elbows and fingers. I also have a little bit of neuropathy.

Again, you are in my prayers, and please keep us posted.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

You are a talented artist! Your art is quite beautiful ! I haven't a clue how you are able to make miniature animal figurines an inch long. I suspect that your artistic talent brings you much joy and comfort . Take the time to decide what to do next. I found that, for myself, the more understanding I gained of my condition and the available treatment options , the easier it was for me to make an informed decision. I wish you the very best in whatever decision you make . Bless you! You have been through so much.

Cathy 

 

 

 

 

yamster34
Posts: 75
Joined: Apr 2015

Annabella, your artwork really is beautiful! My experience with chemo and radiation only comes from watching what my parents went through. I have chosen to rely on God to heal me, instead of doctors or treatment. This decision against treatnent has made my quality of life great. I did try a vegan diet for a couple of months because my pharmacist niece said it cured some people with end stage cancer. I was mainly eating only fruits, vegetables, and nuts at the time. I noticed how much better I felt eating that way, but I was not getting enough protein so I had to start eating meat again. When I was diagnosed with stage 4 ovarian cancer, the doctor seemed to think I was close to dying. I figured that if the doctor had written me off only a miracle from God was going to save me. Plus, only God knows when any of us will die. My diagnosis came almost 8 months ago and everyone is telling me I look much healthier now! I hope that you have peace about whatever decision you make. I was told by someone very reliable that they made an unscientific observation that cancer patients that do not get treatment, live longer than those that get treatment. The fact is that chemo kills the good cells right along with the bad ones. It is really hard on the body.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Hi Yamster, faith sustains us and offers great comfort when fighting cancer. However, God does not expect us sit back and wait for him to do everything. He gave us the means to discover ways to help ourselves. That's what scientists and doctors do. Ignoring the answers that they were inspired to discover is tantamount to telling God " No thanks,  that's too much work. You do it." There's always someone who will tell you about SoandSo who was cured with this diet, this herb, that juicing diet. If you want to beat cancer you needy to consult a GYN/oncologist!  Let them check you out and see how you are really doing, what treatments they recommend. Please don't wait until it's too late! Having faith in God does not preclude getting the advice and treatment you need. God will be there to support you and comfort you.  Sandy

I_believe's picture
I_believe
Posts: 8
Joined: May 2015

Sandy, i' m new to this, and i highly question whats the right way...

 

They say my mom's cancer was growing for a year, she hasnt been feeling good, but didnt see gyno, so didnt know whats going on. She just had a surgery and she is feeling much much better, like there has never been cancer in our lives. Im scared for her to start chemo since we dont know how it will go and maybe its better to enjoy what she feels now (without chemo) or go through chemo hell and die in pain and suffering, i really dont know. I pray, i read, i hope and we try to enjoy everyday as it's last...

 

 

pinky104
Posts: 574
Joined: Feb 2013

For me, chemo wasn't anywhere as bad as I'd expected it to be.  I was given a drug called Emend each time I had chemo (I started it two days before each round) and I had absolutely no nausea or vomiting.  I had a little loss of appetite, which went away after a couple of days.  I had some significant shortness of breath when I walked through a store.  I was given a blood transfusion to help with that.  The sores I got in my mouth went away quickly after I used a prescription mouthwash my oncologist recommended.  The only significant problem for me was losing my hair.  I didn't like my uncomfortable wig and didn't want to wear a scarf, as the wind would blow it and expose my baldness.  It was summer when I went through my chemo, so the wig was hot.  If I had to chose between being bald (looking like my husband) and continuing to live, the choice was obvious.  I do have some peripheral neuropathy which has lasted, but again, that's pretty minor.  We hear on TV about how bad chemo is, but to me, it's nowhere as bad as it's portrayed to be. Keep praying and help your mom out whenever you can.  The moral support you give her might be her best medicine!    

yamster34
Posts: 75
Joined: Apr 2015

Sandy, I believe that God would rather have us start by making changes to our diet before resorting to things as radical as chemo or radiation. We can't expect Him to heal us if we are not willing to change what is making us sick. People may think that by me not getting treatment that I am doing nothing. Changing my diet from nothing healthy to only healthy foods was a major decision! My family members that once told me that I have to do what the doctors say, are now in agreement that not getting treatment was the right decision for me. I wonder if when a cancer patient dies, if it was the cancer or the treatment that killed them. There are no statistics about patients that do not have treatment. We need to know all of our options and make an informed decision! My informed decision is based on the side effects I have read about different treatment options. This is the best decision for me and a decision only I can and should make. I can't guarantee if what I am doing will make me live longer or not, but my quality of life is definately better without treatment!

mamamoody's picture
mamamoody
Posts: 28
Joined: Jun 2015

Let me say that I definitely believe in a God who heals, in prayer, and miracles.  After finding out that I had cancer, Hubby and I prayed as to what we should do and chose to do the treatments.    I don't believe that one way over the other is necessarily more spiritual or better, because whichever way I chose, God would be with me.  My trust is in God himself, not the prayers, or the diet, or the treatments.  One pastor told me "if God chooses not to deliver you from it, He will go through it with you".  That is enough for me.  It's a win-win situation.

We don't know all the details in each person's life, because of that, only they can judge what is best for themselves, and that decision should be respected and supported.  

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I agree with every word you said.  I know that God has led me to every decision that has been made.  He is my strength and comfort

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