Forum

× click new topic to begin your post

MVAC side effects

1 year 1 week ago #55924 by Cynthia
One day at a time my dear just keep your eyes on getting to the end of your treatment. Talk to your health care team and don’t spare the details and see if they can offer some help dealing with your side effects.
Keep us updated I will be thinking of you.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

Please Log in or Create an account to join the conversation.

1 year 1 week ago #55919 by JIMG4
tealady24 I'm thinking of you!!! Keep fighting!!! Stay strong!!! You've got this!!!

And thank you, everything will go well on my end!

10/25/18: TURBT
11/06/18: DX Ta - low grade non-invasive TCC
The following user(s) said Thank You: Tealady24

Please Log in or Create an account to join the conversation.

1 year 1 week ago #55914 by Tealady24
Thank you so much for the support. Why do doctors tell us they don't expect side effects to be bad, when mine have been horrendous.

I am in chemo hell right now with days of vomiting and nausea that never wants to quit, mouth sores, hair loss, no appetite and very little relief from any " remedy".

I cannot fathom anything worse than this and just keep praying for the strength to get thru each day.

I truly hope everything goes well with you JIMG4!
The following user(s) said Thank You: JIMG4

Please Log in or Create an account to join the conversation.

1 year 1 week ago #55913 by JIMG4
Cynthia,

first, thank you for being on these forums and sharing. I hope you continue to be healthy and that all is good.

For quite some time now, I thought I was crazy. Nagging health conditions (unexplained anemia, pain, continued weakness, fatigue, constant need to urinate, having to push to urinate, etc...) that have persisted for several years. Over that time, I found myself needing to rest (nap) (at times quite lengthy naps) and found sitting in the jacuzzi for an hour or two helped me get thru. All the time I did this, my spouse (innocently) would nag at me and needle me to get up and get stuff done or as we joke about it now...."get your lazy a** off the couch and get to work"!

Of course, she feels horrible about it now but point being, giving yourself permission to do these things is huge. Even when you don't have a diagnosis! Your words couldn't be any truer and patients/people need to hear them and realize it is okay to set everything else aside.

I have not been officially diagnosed yet. Hematuria 4 weeks ago, tumor found by CT scan 2 weeks ago, met with urologist 1 week ago, cystoscopy 1 week from today, TURBT to be scheduled shortly after cystoscopy. Have had so many other symptoms for quite some time now and in retrospect it all adds up, but holding onto possibility that tumor is benign. If not, as my urologist told me, we know the tumor has not gone through the outer layer of the bladder and he feels we have found this early enough! Best thing out of all this is, I finally have evidence that tells me I wasn't crazy and now I know what I'm fighting.

To TeaLady24, stay strong, fight through, prayers and thoughts to you!

10/25/18: TURBT
11/06/18: DX Ta - low grade non-invasive TCC

Please Log in or Create an account to join the conversation.

1 year 3 weeks ago #55858 by Cynthia
MVAC is known to have side effects as you already know. I have had a lot of chemo and there are a few things that can help in my experience. I will share them with you on the agreement that you use them to frame questions for your medical team. Never take advice from strange ladies on the internet without talking to them.

Take your nausea meds before you need them and keep them in your system as prescribed. Waiting until you need them makes it harder to get on top of it.

Never let your stomach get empty as it can exacerbate nausea. I always kept a pack of crackers in my purse and a small can of juice.

If medicinal cannabis is legal in your state talk to your medical team about how to be certified as a patient if you are interested. It does not have to be smoked there are several delivery methods and the right strains can help a great deal. It can help deal with nausea, lack of appetite, aches and pains, lack of energy, not being able to sleep and others. The people working with the dispensaries are knowledgeable and should be able to help you.

Talk to a nutritionist about you nutritional needs. We all know what foods work for us when we are nauseated but if you have no appetite things can get complicated. They should be able to help you with suggestions and help you understand your dietary needs during chemo. I was told to up protein intake among other things. I craved chicken breast and spinach to the point I couldn’t face it for about two years after chemo. Chocolate milk was my friend.

Give your self permission. To take a nap, to not take care of others problems, take a long bath or let someone else do the laundry. People will want to help let them you can help them back later. Exercise as allowed and as able even a short walk is better than none. Self care right now is very important.

Communication is MANDATORY as you go through chemo. Don’t let anything go I can assure you that cough will not get better by tomorrow as a general rule. If you can’t eat you will get weak and healing will be harder. This is a case of having a still upper lip is not a good thing. You are part of the team and they can’t do their work if they don’t know. Ask who you should call if you have questions and keep the number with you.

It is a journey every day will take you closer to getting better. But the road from here to there is going to have bumps. Chemo is cumulative for most of us and we will feel weaker as the doses go by. But the good news is with in a few weeks of finishing chemo I was getting back to normal.

Losing your hair if you do is traumatic, you know it is going to happen you think you are ready but. Decide now if you want a wig or if you want to wear hats. I had both but the wig was hot so I preferred the hats. You need them it is surprising how cold you get until the hair grows back. My hair was gorgeous after it came back in unfortunately it went back to normal.

I have been to infusion twenty times. My best advice is to keep on top of the small thing health wise so they don’t get big, cut yourself a lot of slack and keep you eyes on the prize.

Let me know how you are doing and we are here if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: cltyxx, Tealady24, JIMG4

Please Log in or Create an account to join the conversation.

1 year 3 weeks ago #55857 by Tealady24
I started chemo one week ago with these 4 drugs. I have been so sick everyday and nausea in between. Will I feel better at all or is this how it is until chemo is done?

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 1720 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: Vls57
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 52796 Total Subjects: 6870 Total Users: 8449
Powered by Kunena Forum