Not sure what to think any more
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Michele: I hate the waiting part, too! My old onc would let me wait a week, and wouldn’t discuss anything over the phone. Got me mad when I had bad results that she didn’t care!! UGH!
I’m now at a new cancer center… I get my results in a couple of days now! And I feel like my onc cares!
You can scream on this site if you want. (All caps). That’s what we’re here for! I’ve done it! And I’ve rambled. That’s what this is for: support. And information.
Good luck.The pet scan results are in but they will not give results over phone.
My husband is currently on gemzar and xeloda which they have him on 12 pills a day. He is week on week off. He has already been on gemzar and cisplatin but the cisplatin is what started the neuropathy so they went with just gemzar. But his tumor markers have been on a steady climb since December so they added the xeloda. They started him out on 6 pills a day then it went to 12 then they wanted it to go up to 18 a day but he told them no way. The 12 a day I think is just too much.
We haven’t been back to the U of M since March. They told us that the doctors here close to home were doing everything they Should. Dr. Z called our ONC here and talked to make sure they were on the right track.
I just don’t understand how they can let a patient set and wait 2 weeks for results.
Thank you everyone for being here to listen and for your information.
MicheleSo sorry to hear about what you are facing. I don’t have any experience with Chemo other then Gemzar, but I can understand the frustration with side effects from chemo. Sometimes it just didn’t feel worth it, but I rode it out. My side effects were mostly centered around gastro-intestinal issues and I ended up in the hospital once with a bowel obstruction due to the slowing down of my intestines during chemo.
I hope you get some help for your husbands side effects and he can continue on whatever treatment they give him. And I am hoping that the PET scan results are good!
Hugs,
-Randi-Michelle,
I’m sorry your husband is having problems with side effects. I was honest about my feet/hands and the neuropathy and the hand/foot syndrome (2diff chrmos). If I had known what was to happen, I might have changed my mind and tried to stay on the first chemo longer… It all depends on the patient, and all you can do is be supportive.Dear Michelle,
I am sorry for all the physical and mental pain you and your husband have had to endure. If he is on Xeloda, can the doctor lower his dose to make his pain more bearable? Lauren had a hard time with Xeloda and she was finally switched back to 5-FU which is similar and the foot pain went away. I did get Lauren some special foot cream for use with Xeloda online and it did make her feet feel better. I can look it up if you want some. It is kind of pricey, but well worth it. I can’t imagine having to wait so long for results. That is pure torture. There are wonderful social workers at U of M that you also might be able to vent to. Lauren spoke with one once and felt much better afterwards. Hoping and praying for you and your family.
Love,
-PamDear Michelle,
I am so very sorry to hear what you and your family are going through right now. You have every right to be angry so you go ahead and vent away as much and as often as you want to. That’s what we are here for, to help if we can.
My dad had a ton of good periods and bad periods too and that is something that we see here quite a lot unfortunately. It doesn’t make it any easier for you I know but so many people go through what you are experiencing now. So please, you keep coming here and keep on venting if it helps.
I am thinking that perhaps our Dr Giles would be able to help a bit here. He has helped many of our members deal with a range of difficult issues and if so, he can be contacted here –
http://www.cholangiocarcinoma.org/ask.htm
As to the numbness in your husbands feet, this is definitely something that you discuss with the onc on Friday about as there are things that can be done for that. I did a search here on the site for you and came up with these discussions –
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1799419053
This link as well may be of help –
http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx
Remember that we are here for you Michelle.
Hugs,
Gavin
why the long wait on results i am wondering? did they say?
we have usually had our results within 2 days…. i would go insane waiting
that long!so sorry for the long wait! the whole cancer thing is nerve racking enough
without making us WAIT so long to get results.
Michele,
My heart goes out to you and your family. Just want you to know you are not alone. This is an awful nightmare for all involved and when your husband feels down or defeated, I know you do too. He may just be having a ‘down’ week and may rally for more fight very soon. It’s just a ride he wants to get off of and I don’t blame him. Like you, I am watching my sister suffer this CC and try one treatment after another while really trying to stay positive. She is currently on Xeloda and seems to be having some side effects from it that are discouraging her. We are going away for one overnight of R&R to escape everyday life. It’s especially hard with work, kids, etc. Hang in there.
WillowThey haven’t even mentioned anything for his feet. I will be sure to ask Friday. I’m sure he will complain about having to take more meds..other wise he looks healthy and still goes to work. He just dont have the energy he use to. I think that’s why I have such a hard time excepting that he is sick and have a hard time listening to him talk about wanting to quit chemo. Lately he’s always reminding me of how much he loves me and is always asking me if I realize how much he loves me. I just so bad just want to break down and cry. Don’t know why he thinks he needs to reassure me.
Thank u everyone
MicheleShel have they given him anything to help with the feet? Mine have been pretty numb for about 15 months. Initially they were painful and it hurt to walk then they gave me some meds and it improved. But the numbness is still in parts but much less pain. I take Neurontin, Cymbalta ( had to fight insurance for that) and B6 100 . If he hasn’t tried any of these ask the doctor. It can be very frustrating to not feel well and if something helps maybe that will help him.
Cathy
Michele, this cancer is like a meteorite hitting a crowd.It can afflict anyone, even a priest or a nun or a doctor, people who lived relatively pristine lives, I am sorry your husband was diagnosed with this awful disease, it is his choice to make, and it is difficult for me to imagine how terrible he must feel to say that.Value every day there is nothing worse than waiting for such results, I hope the result give him a lift to fight. God bless, Pat
Michele, I know how you feel. My husband was diagnosed last July. Since then he has had three drains to relieve the bile, an operation to remove the tumor that did not work. Then, a round of gem cis, and another round of gem sis and another operation to hopefully remove the tumor, but that failed, too. After that more, chemo (stronger). We don’t know if that’s working or not. He has had radiation embolization (radiation beads directed to his liver). He is scheduled this Wednesday for radioembolization for the other side of his liver and then more chemo. In the meantime the chemo and/or the radioembolization is creating havoc (I think) on his memory. We do things in the morning and then he asks what we I’d because he can’t remember. The fatigue he is experiencing has been debilitating. The whole thing really s&@!ks!
Thanks for letting me vent, too.We are still waiting on pet scan results for my husband. He now hasn’t been taking his chemo pills like he suppose to. He says he’s sick of the numbness in his feet and says if he continues on all the chemo it’s going to make it so he can’t walk.
In the last few days he has informed me that if the pet scan shows the cancer is in other spots he’s done with chemo. He says he’s not going to spend the rest of his life feeling sick from the chemo.
I’m not sure what to think. I feel so angry!! It just makes me soo mad I just want to scream or find something to beat the shit out of. All I can think of is why my husband, what did he do so wrong!
I’m trying to keep it together for my kids sake. The have too been worked up waiting on these results. The doc office won’t tell us nothing over the phone which I think is wrong. He had the scan a week and a half ago and here we set waiting. We won’t know anything until Friday. Friday can’t come soon enough.
Well I think I vented enough but I just don’t know what to do with myself.
Michele
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