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Mamas Surviving Cancer... NEW THREAD -May

11K views 244 replies 11 participants last post by  auntieM 
#1 ·
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Thought I would get us started with a new thread...

How is everyone doing?

I am ok...dealing with my poor ds's shock to my hair free head...I really did not think he would respond like he is to it at all....

bbl
 
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#202 ·
Traci, in response to your question, I have been very interested in what I can do in terms of nutrition to stave off a recurrence & help myself to heal. I have to admit, I'm a bit of a skeptic. My background is in biology/biochem, so I want to know that if something hasn't been proven to help, but shows promise, at least it is not thought to cause harm. I also feel like some supplements can be helpful, but for the most part, food provides the best source for nutrients. Some of what was mentioned on that site had me nodding my head, other things had me saying, "I disagree," out loud--my DH laughs at me when I talk to the TV. :LOL I didn't notice a name on that site, so that makes me a little wary. I would use it as a starting place to look into his/her ideas.

I'm definitely thinking that more omega-3s is a good idea & am intrigued by CoQ10--one of those things I feel has promise, but no really strong evidence. I'm also thinking about upping the fruit & veggie intake, going organic as much as possible & aiming for mostly meatless meals. On the other hand, I'm finding it a bit harder to make myself be more careful about sugar & alcohol. I have a big sweet tooth--especially where chocolate is involved. I also find myself rebelling against any thought of self-denial & almost binging on whatever it is I'm supposed to avoid.
:

I hope that your ears clear up soon. No fun at all.... When I was in chemo, I felt like my tumors ached a bit as they shrunk. I suppose that makes sense as there must have been a lot of activity cleaning up the dead cells. I'm holding good thoughts for your PET. I really strongly disliked (read hate) the pain that accompanies injections. Yuck.

Well, I have 29 more rad sessions to go. Not too bad so far. It's been nice to see DH mid-day.

DD starts at a parent participation pre-school next week. I am really jacked about all of the things that we are all going to learn.

Myrrh, Mom asked after you again. I was sad to say that I haven't heard from you in a while. I hope that you are ok.

How is everyone else? EFmom, any decisions on the surgery? Bubbysmom, how are you coping? How is your ds? Janet, how are you doing several weeks out from your last chemo?

Love & hugs & healing thoughts & prayers.
 
#203 ·
AuntieM
Dr. Sears even backs the flax seed oil which I thought was waaaay cool:
http://www.askdrsears.com/html/4/T041700.asp

IKWYM about the sugar that is a huge one for me to eliminate too!
darn..dd just woke...gtg!
 
#204 ·
I love to add a little flax to a yogurt shake with fruit. Yum! Yesterday, I tried a similar smoothie with a little tofu, some mango juice, a banana & some flax seed oil. It was fabulous.

Thanks, Traci, for the Sears link. Have you read his family nutrition book? I've heard good things, but haven't read it...

Bye for now.
 
#205 ·
Prayers and healing white light please my way..tomorrow is my big day for my 2nd PET results...

all of us have colds this week....


AuntieM -nope never read Dr. Sears book on nutrition.....hhmmm

list is so quite girls...please post when you are able
 
#206 ·
My surgeon finally got my MRI results and she was pleased. She thinks a lumpectomy is the way to go, and I'm going to do that. Surgery is scheduled for next Tuesday, so please think "clean margins" and other positive thoughts for me! I will be most relieved to finally get this off my chest, so to speak.


I am also looking into the nutrition aspect. I'm also a skeptic with a science background, and I'm thinking of changing to a low fat diet richer in fruits and veggies, with lots of walking. AuntieM (I pm'd you, btw), I know what you mean about the binge tendency. My sense of taste is finally returning and I'm allowing myself a week of binge eating before I make the switch.

Traci, good luck with the PET. I'll be thinking of you. AuntieM, keep plugging away with the rads--I'm glad to hear they aren't too bad. Janet, I hope your rads are easy, too. Bubbysmom, how are you doing?

Hugs to all!
 
#207 ·
Susun Weed's "Breast Cancer? Breast Health!" book (I know not everyone has bc) had a lot of recipes and herbs and such to help stop tumors... during treatment I was taking dandelion and nettles to boost my blood, and mushroom 7 source to shrink tumors, etc. An interesting overall read...

Good luck next week EFMom! Thinking good thoughts Solange... and everyone!

My MIL was making us grilled cheese sandwiches for dinner and said "do you remember how much cheese you ate last year?" We laughed over it, really strong cheddar was the only thing I could taste a couple days after chemo...
 
#208 ·
Well, once again my PET was not clear. It was actually worse then the
last one.
No new growth, but under my armpit and in my chest and in my neck the
spots were.
My oncologist wants to biopsy the node in my neck to see if it is
still HD and he said if it is [HD] that would be bad...?..why would
that be bad? I did not ask or think about it until after we left.
He said he wants to rule out what it is in case it is a new cancer
growing from the side effects of ABVD.

SO he then wants me to start salvage chemo on the 26th and then do
the PBSC collection transplant. He said he would send me anywhere I
want to go for that and that the salvage chemo he would do here at our
local hospital.

I am thinking I want to go to Sloan Ketterling since it is _the_
Cancer center. I have heard no one rave good or bad about any
hospitals here in Ohio. Anyone?
I am wondering if I should call them before getting the biospy done to
see if they want to do that and the salvage chemo there. This would
mean what to do with my 2 young children during this time...to lug
them to NY with my husband and I during a very stressful time, or
leave them with Grandmother while we are gone (which as an AP parent is going to be really hard not to think about the damage done there with seperation issues-as I have already had enough of that with DD).

So many things to decide in such a short time...alternative treatments too....
any thoughts greatly appreciated.

Wish I had better news to share...I guess I am thankful for the PET, the CT scan did not show any of this.

I will keep fighting and I will win.
 
#209 ·
Oh, Traci, hugs to you!
I am struggling with what to say. I guess 2 things come to mind. First is: Yes!!!! I totally agree with you. You WILL keep fightning & you WILL WIN!!! Second is: in terms of what to do with your babes, you will come to a decision that is right for you.

I think that you are wise to contact whatever center you think you might get treatment from to see how they advise you to proceed before you make any decisions.

EFmom, I'm glad that you have come to a decision about your surgery.

owensmom, thanks for the suggestion.

I am sending out prayers & thoughts of
comfort & healing to you all!!!

Off to try to polish the house up a bit. DH & I have our first parenting class associated with the parent participation pre-school that DD is in. She had her first day today. So fun!
 
#210 ·
Traci, Yes! You will win! I'm so sorry about the disappointment that is inevitible with the results you received though.
My dr. would say-just a bump in the road-nothing we can't get over together!
EFmom-I will have you in my thoughts especially now and on tues.
I hit my own 'bump in the road' when i ran out of my ativan prescription and had some vomiting.
: All better now though.
Chemo tomorrow-yippee!
gota go dh hollering for me-dindin!
Love yas!
 
#211 ·
: friends
Well, after much delibertation, we have decided I will go to NY to
MSKCC.

I found a clinical trial there that I am eligible for and we are
awaiting for Sloan to call back with an appt to go meet the doctor
next week and talk about this treatment.

My mom had a good analogy for me, as she is a phlebotomist, and said
nurses can do her job, but they may have to poke the patient 2x, where
she can come in and get it the first try. So yes my hospital can give
me the salvage chemo and then I could travel to NY, but we decided to
just be at the best place for the whole treatment. My chemo nurse even
said MSKCC sees 100 people like me a day where my local center see
maybe 5-10 people like me a day. If this trial for some off reason
does not work(I am very confident it will) I can come back and get the
standard treatment. Where as if I get the standard treatment 1st, I am
no longer eligible for the trial.

Here is a link to the trial:
http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=04-047

Tentatively, when I go for treatment, I will take my children, my
mother, and my husband will join us hopefully for a month(he can't be
gone the wholetime or he will have no job).

So that is it for me right now...I will be back here when I can
sorry to be just about me in this one...
 
#213 ·
Yup, I was thinking the same thing--feel free to come here & have things be all about you. We totally understand.

I'm glad that you've come to a decision, Traci. I always feel better once I get into the groove of a plan. I am also glad that both your mama & your husband will be able to come so that your babes can be with you.

DD here... got to go...

 
#214 ·
Quote:

Originally Posted by auntieM
Bubbysmom, how are you coping? How is your ds? chemo?

Love & hugs & healing thoughts & prayers.

Hey, thanks for asking. I just had my second round of doxil and we shaved my head two days ago. I had a fever today and last night (but didn't tell the doc that) but thankfully the on call onc told me I could do homepathics, water and chicken soup. I feel like chemo girl (and look like her too).
Protocol team had difficulty finding the sucker on ultrasound during my visit last week, Doc was elated that she couldn't feel my lymph nodes, so all is looking good for a cure, but no expectations here. Amazing how a cold can make a cancer patient feel like crap. Doing neupogen shots too. And I finally get that portacath next week.

Good luck at Sloan, I go to Duke and they are wonderful.
 
#215 ·
good luck in New York Traci!!! I will be thinking about you!
you have such a great attitude, you are going to beat this thing!!! I'm so proud of you!

bubbysmom, hang in there!
sounds like you're on the road to a cure! hope you're not feeling too terrible with the chemo, it definitely has its ups and downs, and hope you're feeling o.k. about the new chemo girl look, it takes a bit of getting used to. I've still got that look myself, although there's a bit of peach fuzz on my head now.

myrrhmaid
how did your chemo session go? how are you feeling?

EFmom, I will be thinking of you in surgery tomorrow, I'm sure everything will go great! Get lot of rest and don't try to do too much afterwards.


I started radiation today, it wasn't too bad, but I started to get a bit antsy after lying still for so long --apparently it will be quicker from now on, it was just the first day that they needed extra time to set things up. Maybe I shouldn't eat 5 cookies right before my session either, I think I was having a not very well-timed sugar rush.


I had a bad week last week and the week before, I felt so exhausted, post-chemo stuff I guess, plus there was a lot going on, Maxwell started JK (!) and Julian had not been sleeping well. I was feeling I couldn't cope any more with the middle of the night bottle feedings, I needed to get more sleep, I was desperate, so I decided to try to night wean him. I didn't night wean Maxwell till he was well over 2, but things are so different when you're not breastfeeding. Anyway after one crazy night of rocking him and soothing him for about 5 hours, the next night he slept through the night! And he's done so every night since!
Whew!

Hey speaking of breastfeeding, my friend was looking for a sourdough starter recipe and she heard from someone that you could make one from breastmilk! Isn't that cool?! I was thinking I wish I still had a bit of mine in the freezer. I don't know, maybe it could have softened the blow of having to stop breastfeeding, plus, wouldn't it be so hilarious to have people munch on your scrumptious homemade bread and then tell them "you know, it's made from my breastmilk"?


Anyway, I love you mamas!! AuntieM how are the rads going? Owensmom, have you been painting these days? Big kisses and hugs everyone!!
xoxox Janet
 
#216 ·
Just wanted to check in before I leave for my lumpectomy in about half an hour, to be followed by hours of waiting at the hospital, of course.
They do it out patient, or at the drive through window, as we call it, so I'll be home tonight.

I'm not at all nervous, but I sure wish people would stop asking me how I'm holding up--it make me feel like I should start worrying!

Love to all, and if you have a few spare moments think "clean margins" for me!
 
#217 ·
((EFmom)) You'll do awesome!!

When I had my surgery, ds was 2.5 yrs old... I had to leave at like 4:30 am to get to the hospital for check in, so grandma came and slept with him after we got up.
We have never really talked about since then.

The other day he said "I remember when you went to the hospital and I woke up and grandma and her pillow were there, and then we all drove to the hospital and the sun was coming up and then I couldn't find my little soccer ball".
 
#219 ·
Hi Brave Beauties. Queen of fuzz here...thanks for checking in everybody. helps to hear how we are doing.
I'm on a weak spot for the moment. Having some pain, nausea and vomiting last few days-ugh. I think the procrit really is making my hair grow faster!
Laying low for now-dh has been taking time off to be here so that helps.
11 treatments down 5 to go.....
i can feel the bleomyicin and coughed all night after treatment. bleh
xoxoxoxoxo
 
#220 ·
Just checking in quickly with all my favorite Brave Beauties!

The lumpectomy was a walk in the park. I can't believe how easy it was. I came out of the anesthesia feeling great. My breast is a little sore, but I'm chugging down the Lortab, so I don't really even care. :LOL I'll just steer clear of doing jumping jacks for a while. I don' have any drains in, so I expect it will heal fairly quickly.

My surgeon called today while I was in the back yard with the puppy. She left a message saying she got the pathology back and it looks OK. I'll get the details tomorrow, but so far, so good.


Myrrh, keep chipping away at those treatments. Queen of Fuzz, I love that title. My kids love to pat my fuzzy head.

AuntieM, hope you are feeling better!

Owensmom, it is amazing what the kids remember when we don't even think they are paying attention!

Janet, I'm glad the radiation is going OK. Keep us posted. I'll be joining you at Camp Nuke-em in a few weeks.

Bubbysmom, glad to hear that your treatment is progressing well. Can't say that I've enjoyed the "chemo girl" look, but this too shall pass. We'll welcome you into the fuzz club soon.

Traci, good luck! I think you are making the right decision.

Love and healing to all!!!!
 
#221 ·
Hey Friends...
I am so happy to see you all here posting with good news and strong mindsets...

Myrrh...
I know these last treatments get rough..I remember I just wanted to stop and would pretty much start barfing as soon as I stepped foot into the office. What wortked for me was someone told me to Just keep thinking; you have done 11 treatments..and that is amazing!~and try not to worry so much on how many you have left..hard it is but these ones will go just as fast as the first 11 did...you just try to hold on to that. I am glad you dh is home to help you...

AuntieM it's ok ..you have an emotional day..I know I have had my share..and do not be afraid to share with us ...ok????..I would feel awful to know you stopped typing because you did not want share what you were feeling with us for fear of of making us feel sad or something..kwim?

Thanks owensmom!

EFmom Great news on you pathology!!! I cannot believe you got it back so fast. I had my bio on Friday and my doc said we would be lucky to have the report back Monday.....

Janet glad to hear from you....hope your next rad is quick and um..sugar free....lol....

I am going to NY next week on the 29th and will see the doc at MSKCC on the 30th.
I have talked to him already and he is awesome. I cannot wait to get there and start treatment. Crazy to be excited about getting chemo, eh...lol...

He will send me home on the 30th with a return date which I will not know until the 30th. SO we are praying, praying, that all will work how it is supposed to as far as housing goes; because that does not give me much time to sign a lease.
I am still taking my children with me and my mother is coming. My husband cannot come until Dec as his work will fire him for missing so much work at this point. And that is not an option for us now. There is some talk amongst family about me taking the kids, but no one has any solutions as to what would be done if they stay here in Ohio without me.
I know I can be with them while I get salvage chemo but when it comes time for my transplant I think it will be different.
SO for 2 months out of this whole ordeal I still get to be with my children and then the 3rd month maybe here and there. Much better than just leaving them high and dry for 3 months and coming back to major attachment issues with my DD. Yes, yes, I know what the big picture here is...my health ...which this treatment will keep me here for years....but part of my health depends on me not being stressed out with worry about my children and who they are with or hearing them cry over the phone...

so that is it for me..
I have to go...
I do not know if I will have www while I am in NY...I will try to let you know as soon as I do so you do not wonder about me..
 
#222 ·
Hi Everybodee!! Just a moment I can take to let you all know you are in my heart, thoughts and prayers. I did real well this time round until the 5th neupogen shot-then I had some vomiting. I can tell when my wbc are low-I get a weak bladder. Nothing like puking while tinkling all over yerself-ugh! OH! The HUMANITY!! I also had 3 'dates' with the fleet enema bottle-don't know who enjoyed THAT more!
: o.k. 12 down 4 to go! I can hardly believe it!!!! I had a pulmonary function test last week and I went from being 20% above average to average. Time to break out the bong! Now the dr. wants to do a ct scan to see if there are fibroids are not. Does anyone know if there is a way to treat lung fibroids? I'm really reluctant to get this test if it's only going to tell me I have them and we can do nothing about it. That radioactive iodine is painful! I'm taking bilberry herb for my veins-which are blowing left and right-thrombosis- and very hard and painful. I think it is working but I have to stay on top of the dose since we keep assaulting the poor buggers!
Love ya all! Take care and keep in touch as you can!
 
#223 ·
gosh girls so quiet here...
Hey Myrrh.....you are alomsot done..I don't know anything about a natural fighter for the fibroids...I just pray you do not have them so it is not an issue for you....

I leave Oct 14th for my new home in New Jersey-West New York. I start treatment that following week.

check in girls...
 
#224 ·
Myrrh, what did you find out about the fibroids? I hope that you are ok.

Traci, what have you been able to work out concerning your kids? How long will you be in NY/NJ? Will you be able to stay in touch?

My last rad is scheduled for next Thursday. I am so glad. I'm no longer in chemopause!! I am so relieved.

Radiation is exhausting. I cannot believe how much it has totally knocked me on my butt!

How is everybody?

 
#225 ·
AuntieM I will be in NY for 3 months and my kids are coming with me. My mother will be with us and my husband will be with us this first week. Then we will be alone for a week and then a family member is coming out for a week. We kinda have people lined up like that to help us.
I cannot be without my kids for three months. Could any of you? For me it is a huge part of my healing.
Yes, I will be taking my laptop so I will be in touch here.

I am a bit-well a lot
upset with my oncologists' office here in Ohio. They have really screwed things up(again
). My whole transition seems to be a pain in the woo-woo for them -well my oncologists' phone nurse who handles all the paperwork anyway.

My dr in NY sent them a fax last Wed. which they received at 3:40pm-I have it in front of me- and the statement at the top of the letter clearly states NY's intent of having my PET done on the 17th and then treatment the 18th. We needed my local office to help set up eligibility testing here , bending with my insurance company, on those tests so they would give us the go on the PET in NY(NY said my PET here sucked-as well my oncologist never did a PET to begin with here and they are confused to how he could even compare my last two with what?
).
SO my office did not get anything scheduled until yesterday and Monday. NY calls yesterday saying we need the results pronto b/c my insurance needs to review them with the clinical trial scheme to prove that I am worthy of treatment
!!! I call my local dr office and say look we need these results asap and my local office nurse proceeds to tell me "Look NY asked for some fancy pants blood work and most of it has to be sent out. There is nothing I can do to get it expedited and they will get to it when the get to it." Of course I was wigging out at that time and not thinking clearly at all..but once I clamed down I thought, you know what?, if my local nurse knew that the ordered blood work was so "fancy pants" as she put it, when she got the order list last Wednesday, then why the
didn't she send me that day or the next to get it done? It is an outpatient proceedure-no appt needed-just walk in and hand them your sheet.
SO this morning I am going to call back Ms. Condescending and ask her exactly that-b/c she does not know I have a copy of the order list with the statement made at the top to her from my nurse in NY. I am going to tell her I have it, tell her I see what time the fax came in, and also remind her that my doc here did say that he was happy to help NY in anyway he could with things like this and if she feels differently then maybe I need to let the doc here know.

You cannot tell me she has no idea that my insurance would need these results. NY says they would know that they deal with stuff like this all the time-dr. office's.

SO needless to say my day yesterday was very stressful...I mean basically I am moving Friday to NJ for treatment that my insurance company has not even approved yet and I am scheduled for treatment on the 18th.
Why it should even be an issue to how I get treatment is beyond me and it should not even be on my plate to deal with! How the
do you put a price on your head for your life? "oh, well, insurnace company, I am good for $xxxx amount but after that cut me off."
I have cancer for God's sake..not that common cold give me a
break
and Why my local office doesn't get the sense of urgency here is beyond me
 
#226 ·
Oh, Traci, I'm so sorry you have to deal with this crap on top of everything else. It sounds like your oncologist's office at home has just brushed you off since you are going elsewhere for treatment.
: I'm so glad to hear that you have people lined up to come help you in NJ. I hope your new doctors are wizards!

AuntieM, besides being tired, did you have much in the way of side effects from the radiation?

I have my first meeting with the rad oncologist on Thursday, right after my first post-surgery appointment with my medical oncologist. Now there's a fun day! But I'm so eager to get going with this stuff and get it behind me that I don't care.

Myrhh, the 12 down part is great! I'm sorry you are having such a rough time with the side effects. I love the "humanity" statement. Ain't it the truth?

Love to all!!!!
 
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