Starting Chemo February 2013

they cut my steroids way back also after I complained about not sleeping .. I think I only get a 1/4 of what I originally got..

Wildlyshel, Talk to your MO, I've had a really hard time emotionally and mentally with this and talking with him really helped.  I am on paxil until I'm done with radiation and its really helped me.  Some people dont want to go there but I did and am happy or as happy as I can be without the roller coaster and its kept the really dark thoughts at bay.  I just noticed we were diagnosed the same day   Your MO will know how to help you, keep your chin up your not alone.

Thank you all for the suggestions. I am going to bring up to my MO halving the dose at least and going on something for the depression while on chemo and through rads if I need it. And most of all thank you everyone for your encouragement. I am so thankful for this group...and sorry that it exists at the same time if that makes sense.



And here's a weird story to close...I went to a meditation class yesterday. I don't wear a hat unless it's cold or a wig. Class finished and people were leaving and I am sitting on the floor talking with a friend when I feel someone touching my head. I look up and there's a woman looking down at me smiling and she strokes my head as I smile awkwardly and then she walks out. It was weird. Is this the equivalent of when people feel free to touch a pregnant woman's belly? Which is not okay. Do I have cancer belly on my head? I had to giggle cause people are strange and it will be one of the funny things I remember out of all this.

Wildyshel, it must have been kind of freaky to have a stranger touching your head - not sure how I would have reacted to that - but seems like you took it well.  Like IamNancy, I feel very comfortable around the house "topless", but usually wear a wig anywhere else, sometimes a hat.  Haven't felt brave enough to venture out bald - of course, it's been too cold to do that anyway!

Yeah, that's crazy! Who pets someone's bald head??? I'm not sure what I would have done either!!



I don't go topless around the house either. I didn't shave my head and still have a thin veil of hair but mostly skin. Im just trying to see if I can keep some of it. I have 2 boys ages 10 & 15 and am trying to not make this hard on them. I think them seeing me bald or almost bald would be really hard for them and I don't want them to have to deal with that. I wear wigs or ball caps all the time even a sleep cap at night just in case they come in the room in the middle of the night while I'm sleeping.

Hi Ladies,

I also dont have the nerve to go topless anywhere...not even in my own house. I wear a cap, scarf or my wig around the house depending on who is coming over. I dont want my famiy to see me looking "so ill like". Its bad enough that they see me on my bad chemo weeks when  I'm so fatigued, I run fevers, can barely eat and feel rotten in general with bone aches. I just want to keep things upbeat and positive.

When I attend support group meetings and always wear a wig there. Im just not comfortable without it in public.

I had chemo #4 last Tuesday and my shot on Wednesday. Been running a low grade fever for 4 days now and have a cough. Typical for my se's. All I  can focus on is knowing I have only 2 more chemos to go. So My hair can start the process of attempting to grow back and I can feel somewhat normal again. I guess they want me to wait a few weeks to start radiation to allow the chemo to flush out of the body.

Anybody else getting any radiation info before they start that process? Lets kick Cancers ass and get our lives back on track!

Gina

I too have to get radiation and was going to address this Friday when I had Chemo but forgot to ask about it. You will all probably be getting done when I start as I am having my TE exchanged for implants before radiation starts so I am sure I will have some healing to do before that starts. As for the topless discussion I go mostly topless around my house. I keep at hat at close bay in case anyone knocks at the door! I regret buying all the wigs I bought. I dont wear them. I just throw a cute hat on to go to Target or wherever. I have only worn my wig a handful of times. Mostly to church. I just think you dont know how you are going to look and feel until the time comes. I do still have some hair. In fact the MO couldn't believe how much I had left. I have some fringy bangs that peek out of my hats. Don't get me wrong you can see scalp and it is like 2inch fuzz on my head but makes me feel better then shiny bald I guess. 2 more to go I can do this!!!!!!!!!!!!!

I met with an RO before I started chemo and I think MO said he will send me for another appointment after my next to last chemo (so in a few weeks).  Slv58, I am also considering seeking a second RO opinion.  I believe aggressive treatment is planned for me (since I had a lot of lymph node involvement) but I was born without a pectoral muscle - so there isn't much "protection" on the side that will be radiated.  Want to make sure that potential benefits outweigh the risks.

Wildlyshel: I have 3 more tx's (taxol DD) and I am done. It cannot come fast enough. I have Taxol #2 Wednesday. I don't want to do it but I know I have to. It's like a double-edged sword!!!!

WE will be there!

Strange you said Canadian protocol is 4 weeks, because my RO said I would need 6 weeks (I'm Canadian). No chest wall invasion, no lymph node involvement and tumour is 10:30 right breast and not deep- which is why I can't understand why he wants to do chest wall, supraclavical, axillary nodes. Maybe because I am triple negative? Although I have seen other TN with less aggressive treatments. I'm confused and scared.

SLV58 thats strange because I first heard of the Canadian protocol from my surgeon then the radiologist.  They really want you to do the 6 weeks here in the US but I want to learn more about the 4 week protocol.  I dont meet with him again until the end of May but I believe you can research it a little on the internet. I think it warrants a second opinion. 

Thanks Wildlyshel

Thanks Wildly. I also will be starting rads sometime after my last chemo (May 17). I met with the RO and he wants me to make my first appointment with him 3 weeks after my last infusion to get the mapping, etc. done. I have already gotten some good information from the ladies in the Triple Positive Group. There is a whole skin regimen one of them worked up that several have used and had little to no skin damage. I'll find that and link it in the new thread.  I plan to follow it as closely as I can because I've heard some horror stories of really bad burns and skin damage.

It's starting to get warm down here in Dallas. I was out with the kids walking and going to parks for a couple hours yesterday with my wig on. It was 80 and I realized there is no way I'll be able to wear it during the Texas summer. I too typically wear nothing in the house, keep a hat handy to answer the door if necessary and usually wear a hat outside the house. I probably wear the wig 2-3 times a week for a couple hours at a time max. I do find that wearing a hat out sometimes attracts unwanted attention. Most people are very nice and have good intentions when they come up and talk to me but I don't necessarily want to be the cancer poster child all the time.

I hope you're all doing great this week!

Rdrunner: I am really sorry about all you are going through. I hope they figure this out. Not sure how you feel about being done with chemo (if indeed you are). Keep us posted and prayers to you.

RdRunner I will keep you in my prayers. It seems I am adding someone everyday which is so so Sad! I hope you get some answers. As for me I am on day 4 so has not been a great day. I am grateful for no bone pain, nausea is tolerable, and headaches are pretty slight but this heart thing is what bothers me the most. I am so scared this chemo is damaging my heart. It beats so hard and races so much. Sometimes I feel like I need oxygen. I did mention the heart race thing to the MO and she said its the chemo. I hope my heart can withstand 2 more of these treatments.

Tangles: I hope you will be okay. Just take it easy and try not to worry too much.

Nancy: You are so close to done!!! Awesome!

Rdrunner: continue to think of you and hope you are closer to getting better.