TRIPLE POSITIVE GROUP
Comments
-
NWArtLady - maybe you and fluffqueen need to swap user names ;-)
On a more serious note... I'm still in chemo and don't have that problem but before BC and chemo I did have that problem due to having my gallbladder removed. I found that if I ate too much fibre (veges/fruit) at one sitting I would get the horrible painful uncomfortable gas buildup. I learnt to be very careful about what I ate... The problem has gone away during the past 5mths of chemo. Hope it doesn't come back!
It might be worth mentioning to your PCP in case it's caused by your gallbladder malfunctioning or something?
Jenn0 -
Thank you SK, that was so sweet of you to post the links. I appreciate it
Jack,
I agree the extended waiting for recon. makes this all seem so much LONGER than it should be. I won't lie. I've been tempted several times to just go flat. If I wouldn't have kept my left boob I would probably be all done by now because I wouldn't have done recon. My husband is a boob man though, and I want him to rejoice in my flesh..lol....I dunno.
I wonder, and its just curiosity, if all the surgeries, even the small ones...if they weaken our ability to fight a recurrence....some surgeries have more of a metabolic toll than others...but anytime we're "injured" (cut on or in to)..our bodies have to go into repair mode, and I wonder sometimes if that inhibits the cancer fighting mode...as some (or a lot) of our resources are devoted to healing.
I don't know if boobs are worth it.
Don't get me wrong. I love my boobs...or my booblet and my frankenboob....but at some point I can see for me that they might be more trouble than they're worth.
0 -
Jack,
Not to alarm you....but watch that shoulder pain, especially if it shoots down the arm....and if it just "goes away" on its own....this can be indicitive of heart issues.
Eve! Congrats on your exchange!! Why do you have a drain? Thought I was done with those!
Re: BRAC testing...I was tested, but told the same thing....that I have a gene mutation and they haven't discovered it yet. I believe this because of the prolific cancer rate in my dad's family. It used to only be in the men though, now its skipped over to the women as well. Something fishy is going on there.....lol
0 -
doudoulong my onc also does the TCH x6 every 3 weeks (H for a year). She too feels the SE to the heart is more of a risk with A. Both regiments are pretty standard. She was involved with the initial trials for Herceptin (using A) for metastatic patients.
rozem I have not heard that but my genetic counselor was useless. I was tested (diagnosed at age 49) but the reasoning was due to an increased risk found in those with Ashkenazi Jewish heritage. tested negative. I mainly did it so my brother, sister and their kids would know. If tested positive I would have had my ovaries out too.
I agree with Special K. I didn't have the lat flap but I don't think you would have the energy. I mean you could go but you might have to leave a bit early. Granted both SpecialK and I had nodes removed (10 on 1 side and 4 on the other) so that also made a huge difference. I think I could have done it but again I didn't have the lat flap nor did I take any pain meds.
NWArtLady it might be IBS. (Irritable bowel syndrome). I've always had that.I find managing diet (like Jenn28 mentions) is best. Don't eat to much at one time and figure out what your triggers are. In my case I have the opposite problem. I also find eating too many peanuts or strawberries give me terrible stomach cramps.
0 -
Jackaboo - yep, get the shoulder checked out. Could be orthopedic range of things - tendonitis, frozen shoulder, rotator cuff issues - all very treatable by PT especially if intervention is started early - it can really help. And of course as Ton Lee said, wanna just make sure no heart issues (if it's your L shoulder) - although if you can alleviate the shoulder pain by certain movements of the arm, it is more likely an orthopedic issue. Best to just get it evaluated...blech...I know how much we all LOVE going to additional doc appts by this point in time.
rozem - I was tested at 43 b/c I was "young" and had two paternal aunts with bc, but I was negative. Yes, I was told that there is a small chance some other gene could be involved that they can't test for yet. I don't let it make me paranoid about other cancers...except for watching for those that could be caused by my various bc treatments (aka skin and lung cancer after rads, etc.). I would really question someone telling me to remove my ovaries without a positive test result to go on (unless you have done some very careful thinking/research like Ton Lee has done on the subject).
TonLee, I hear ya on are the boobs worth it thinking. I have had 2 recons with microfat grafting, and then my treament was interrupted with rads and chemo. Fat grafting from mastectomy is very new still, and I am very happy with my results - but I'm only a small A cup, b/c you can only fat graft so much at each surgery to ensure survival of the graft, plus my 2nd graft was done earlier than usual b/c I had less time to expand with Brava prior to rads. Now that I've had rads, I'd need most likely 3 to 4 additional grafts on the L side to equal 1 or 2 more grafts on the R (b/c my L radiated side won't expand as quickly). I seriously don't think I have it in me. And it would have to happen after my chemo and year of Herceptin is up. I have a feeling at that time I will just want to move on with my life and not worry about how big I am. Padded bras make me look like a B and hubby seems happy with my A's. I've never been bigger than an A pre-bc, so it makes it an easier decision for me. But gee, I was hoping for just a little more after all the surgeries, etc.! I am holding onto this silver lining - the lipo of my legs turned out fantastic. I've always been a pear shape...I finally have "skinny" legs - at least they are skinny for me!
0 -
Thanks for your posts Tonlee, Kay and Dancetrancer
Have been in pain all day. Shoulder occasionally alleviated with ice. No shooting pains down my arm, just feels very achy and at times pain into my neck. Feels similar to trapped nerve pain. (when you turn sharply and twinge your shoulder) Had other minor body aches but this is constant and quite severe. I was going to do the 2 week wait thing but not sure now. What's the heart connection? Suppose Im trying not to run to the doctor all the time.
My mood is very low. I feel like its one thing after another. Also its 28 degrees here and us Brits just don't cope well in unexpected heat (or at least I don't).Thinking twice about further surgery. Totally agree with you Tonlee about the healing and worth it thing.
Will keep you posted. Thanks for being there for me.
L
0 -
dancetrance, interested in your story of fat grafting. I wish I had done only fg but most doctors here only do it around implants. I have a fg surgery coming up sometime this summer. Right now, I'm not sure I' want to keep the implant as it is uncomfortable and seems too round or large. I am going for a second opinion before I do anything else.
Tonlee, my ps puts in drain when he does the exchange. I'm not sure all surgeons do.
0 -
Chief Oncology Vampire still on vacation. Darling young perky little Vampirette quickly zipped in a needle while talking a mile a minute. They were not busy today so she kept me captive for another 5 minutes practicing her English skills and finding out my life story. Lab report on blood was not so good. WBC was below normal so they did not do my Taxol. Now I know why I was so wiped out the last few days. Herceptin was finished by 12 noon. Next bus was not until 1:30 so we took the train into town again and had lunch. Arrived home at 3 and slept for 2 hours. Nurse was not sure whether the skipped Taxol infusion would be tacked onto the end. So I may or may not be done in 3 more weeks. Never a dull moment. As we type I'm sitting down with tea and the cheesecake I couldn't eat last night. Yum!
0 -
jackaboo - shoulder/arm/jaw pain on the LEFT side can be referred pain from the heart (aka it is an alternate sign of a heart attack). I am definitely not saying that is what it is (don't freak out), b/c musculoskeletal pain (from shoulder or neck) can still be the cause, but if it is the left side and is severe and not really alleviated all that well with ice or changing the position of the arm/neck, you would be wise to get it checked out. Always better to be safe. At least give your doc a call and see what he has to say, maybe? Hang in there dear. I know how hard it is when one thing topples on top of the other. Sometimes it seems like it never lets up! We are here for you!
Pain can make you more emotional so just keep that in mind - normal response! Evebarry, if you are thinking of getting rid of the implant and going to fat grafting only, it can be done. It is a long process (multiple surgeries), and only should be done with a surgeon who has experience with it, though. I didn't want implants either - personal choice - traveled for my surgeries. It isn't easy (nor cheap), but I'm glad it is the path I chose. All recons have pro's and con's, and we all have different preferences. If you want more information, there are several threads on here: Microfat grafting or BRAVA doctor recommendations and Has anyone had microfat grafting? And there is a totally separate board for fat grafting titled www.fatgraftpatients.com.
Kitchenella, mine was delayed one day (to yesterday) b/c of blood work counts, too. I understand the fatigue!!! Hope you are feeling better soon.
0 -
jackboo09 Are you taking Tamoxifen and if so, did the shoulder pain start shortly after you started taking it? I have had extremely bad shoulder pain that started within 2 months of beginning Tamox. I've been told it's frozen shoulder or adhesive capsilitis but no one has any answer as to why. After an xray and MRI which showed the terrible inflammation I still have no clear answers and I've been dealing with it since Oct. (along with terrible hip pain that started at the same time).
Mine is also so painful that it wakes me up every night and hurts particularly bad when I wake up in the morning. MO is telling me that we are all different in how we metabolize and handle drugs and I may be one of the unfortunate ones to have severe joint pain which is not as common for Tamox. He had me split the dose to see if it helps and so far no change. I went to a rheumatologist as well for a battery of tests because there was a question about autoimmune disorders-ended up with a weak positive for rheumatoid arthritis and gluten allergy but he says this does not explain the severity of my pain and he believes it must be the Tamox since we've pretty much ruled out everything else. Problem is, both MO and Rheum say it's critical to keep taking the Tamox so I'm starting to think I'll be in chronic pain for 5 years.
I've already tried PT which didn't help at all and the PT said that I appear to have some inflammatory response in my joints which is why the PT didn't resolve it. I've even been going to acupuncture x2 months which has not reduced the pain. I'm not telling you all of this to discourage you-just to offer a possible explanation and also to let you know that my severe, persistent pain is not from mets which was my big fear when it started.
I fluctuate in my mood but overall I'm definitely disgusted with the pain and ongoing issues. I really thought that at one year PFC I'd feel more normal and could start to put BC in the past and instead I have chronic pain as a constant reminder. In addition, I find that no one wants to hear it anymore. I try not to complain (much) but I notice that everyone thinks I'm fine now and they don't want to hear about it. Sigh...
I'm so sorry that you have pain too!
0 -
Jackboo09, I had a lot if shoulder pain throughout chemo and expansions, but it went away after exchange.
Rozem, I was tested for brca 1&2 and I was 41 at dx.
Has anyone experienced twingy type feelings (not really pain) in reconstructed breasts? I had exchange 3/28 and in the last few weeks have twinges in both sides, but its the cancer side that worries me.0 -
shore-- I have twinges all the time in both reconstructed breasts. I don't know why, but I do. Sometimes when I am not even moving I will get a twinge of pain. It doesn't happen every day by any means, but it almost comes out of nowhere! I just had the nipples put on and the fat grafting around the implants, but I had it before the surgery also. Let me know if you get any answers
lago-- I will ask for LIDOCAINE AND TEQUILA!!!!
fluff-- congratulations on your adoption!!! you have to post photos!!
rozem-- I agree with all the gals, 3 weeks is not alot of time. I remember I went to the shore with my girlfriends about a month after bmx and I didn't go out to our local watering holes and dance because I was paranoid that someone would knock into my chest. OUCH!!! So I stayed in and watched tv, which was a good thing!!! not hungover the next day!!!
okay.... I must say and boast
....my breasts look ALOT better with nipples!! I didn't realize how much I missed those little little things until I got them back. and yes Fluff they have shrunk down by about at least 1/3 already. Too bad the poor things have no feeling, purely ornamental... The fat grafting and lipo have helped tremendously. My breasts are more rounded and not concave on top and look like a 25 year olds breasts not "almost" 50. shhhhhh!!! At least BC gave me one perk.Have a great Memorial Day Weekend everyone !!!! Last weekend at this time I had just had my first tx and had a temp of 101, couldn't go anywhere. Making up for it this year!!! Going to parties, but only a "couple" of cocktails. I can honestly say I really don't miss the imbibing. After going through chemo and feeling like "crap" why would I intentionally want to wake up in the am and feel that way
Yuck!!!I was told by BS that I did'nt need to have BRCA testing done. My second opinion at Sloan Kettering said to "you might want to get it done at some point, but no rush". My current MO said it is up to me. What does that mean? I am going to get it done, I have sons, no daughters, but still for my own piece of mind.
0 -
Shore I think I had some of that this winter. No issues now though.
0 -
NWArtlady - I struggled with the Big D as a chief SE of chemo, and it continued with Herceptin. One of the onc nurses and I were chatting (if one can casually chat about the Big D!) while I was receiving Herceptin and she recommended taking a daily probiotic. Best thing ever! I had a surgery back in '95 to create a new GE junction between the esophagus and the stomach and was left with IBS-like symptoms, that get worse with stress or illness - probiotics cleared that up and I am a fan!
0 -
I'm a HUGE fan of probiotics, too. Onc put me on them a few weeks ago - I really feel they are helping regulate me better (as good as one can be regulated) while on chemo. I plan to continue them afterwards.
0 -
Which probiotic works best. As one on the D train, I have tried a couple, but there are days I spend in depends. So which do you take? Shore, sometimes I have twinges in my te area and in the concave one where te was removed. Also for the first three or so months, a lot of twinges in the deep areas of the drain tube tracks
0 -
Here's my dog we are getting Saturday. I can't believe I am going to drive 5 hours to get a rescue dog, but he just melted my heart in the picture.
I have some shoulder pain that feels like a pulled muscle. Sometimes goes into my neck too. I notice it at night most when I am laying down. Hips have bothered me some too. Still have some soreness on the right side at the bottom of my rib. I see the onc for 3 month followup and plan to use this as a reason for a pet scan. I am determined to get one and have some peace of mind for a few months.
Here is is. They call him Beckett. His is about 8 months. Half schnauzer, half dachshund they think. cutest thing ever.
0 -
Beckett IS the cutest dog I've seen!
0 -
I know...that foster mom must be a genius with her photography, because if he is even half that cute, he will be adorable. She said that when she took him to the vet they all went crazy over him. I can't wait to see him.
0 -
fluff - congrats on becoming a fairy dog-mother! Beckett is a cutie and a lucky dog!
moon - I just had a consult with a gastroenterologist for a colonoscopy requested by my onc (which insurance will not pay for) and we discussed the probiotic thing. I just tried Phillips Colon Health because it was easy and I didn't have to look very hard for it, as this was when chemo was ending and I was pretty fried. It seems to be doing the trick so he said stay with it, he didn't feel the need to suggest anything different. My BIL is also a gastroenterologist so I will ask him what he recommends and post it.
Today was crazy - Appt with MO - normal 3 month check. Spoke to him about the trial fluff is in - got his blessing and he emailed the trial coordinator in Washington D.C. while I was in the room. Asked my usual list of questions. Left there in time for a post-exchange check with my BS. He was happy. Left there and went to physical therapy for an hour, then returned to MO for blood work and a port flush. Left there and went and had my menopausal mustache waxed off! What a nutty day!
0 -
Hi ladies
Went to my doctor last night as I was able to get an emergency appointment. She examined my shoulder/arm. Basically did arm lifting and rotating exercices. The real twinge came whilst rotating (rolling) shoulder backwards. She then managed to press on the exact spot that was the most painful. Her opinion: muscle strain and not related to Bc. She gave me Diclofenic gel and painkillers and said that we need to monitor it and I should return in a week if no improvement.
The gel does seem to have eased it and last night I did sleep without taking anything. However, I do feel this was from sheer exhaustion (lack of sleep from previous night and emotional strain).
Dragonfly I can totally relate to your ongoing issues and if you remember weve chatted before about hip/back pain. Thank you for your comments again. I see you have pretty much tried everything. Yes I am on Tamoxifen (started it 7 months ago). I am sure it makes my on/off sciatica and other aches worse but what are we supposed to do. Its important to stay on Tamoxifen to reduce reoccurence. Can also relate to people not understanding. Once tx finishes the general concensus is that we're "over it" For me I had warned myself that finishing Herceptin, and therefore active tx would actually be a difficult time. I am more emotional and dont know how to rebuild my life. I'm not working at the moment. Lack of purpose etc. Sorry, this is turning into a rant....
Dancetrancer Thanks for your post. Im very mindful of heart issues but feel reasonably reassured that its not related. I have an echo coming up soon which should tell me how things are.
Fluff Your doggie is beyond cute. Post more pics!!!
To everyone: We have each other for support and thats a wonderful thing.
Liz
0 -
I love the name Beckett! Now I have a funny question for you gals that have finished your reconstruction. Does your significant other want to fondle them? It is not an issue for me as I had a lumpectomy but I always wondered. Also wondered about girls with implants. If I was a guy I would be thinking "I'm fondling a balloon". I think if I ever had to have a BMX I would skip the reconstruction unless my husband was a 'balloon man". ;-). Hope I didn't offend anyone it is a serious question.
0 -
Beckett is adorable!! Congratulations!
Thank you, everyone, for the advice. I will give it all a try!
0 -
Moonflower - my onc was not specific. He told me to just get any brand at the drug store. So my DH randomly picked up something at CVS - this is what I've been using:
My box looks slightly different - but it's the same product - 10 mill cultures, 2 types (lactobacillus acidophilus and bifidobacterium lactis).
DH brought home 20 mil (extra strength) the other day...I sent him back for the 10 mil...afraid to try doubling it while on chemo!!!
Now, disclaimer...I'm a complete newbie at probiotics, and have not researched the brands and types of bacteria/mixes that might be best. I lucked out that this one is apparently working quite nicely for me. Perhaps others will have some more suggestions/research they have done. Oh and please make sure it's ok with your onc...I surely, surely would hate for this to make anything worse for you!!!!!
(P.S. I was petrified to try them, but glad I did. Oh and another girl on the chemo thread got C-diff - ICU - and now that she is better her infectious disease specialist has put her on probiotics twice a day. So that gave me even more belief in them. I am going to go back and see what her put her on exactly.)
0 -
fluff - what a cute doggie!!!
SpecialK - so excited for you about the trial! Which site would you travel to?
Jackboo - SO glad you got it checked out and was able to find out that it is musculoskeletal in nature. And super glad you got some very needed rest and more peace of mind!
0 -
fluff--he is adorable!!! and so lucky to have a mommy like you!!!0
-
Awwww Flluff, that's great news and he's adorable.
0 -
dance - the Washington, D.C. location (Sibley Hospital) because DH was stationed at the Pentagon off and on for 10 years so I have lots of friends to stay with, and DS is up there too. I know my way around and it would be a chance to spend some quality time with people who have been so supportive through this experience.
0 -
That's very cool SpecialK! I have very good friends in Annapolis who I could stay with, so if I should decide to pursue this afterwards, DC would likely be my choice, too. I thought it would be MD And since I'm already in their system, but then I realized I have friends in DC! I also have TONS of friends in the Phila area (lived there 15+ years), so I could visit them as well...but this is all way too far ahead for me to even contemplate! One chemo tx at a time right now, LOL. Just looking forward to the day that I can travel, have fun again, etc.
Actually, if I had friends in Hawaii....ahhhhhhh....LOL
0 -
dance - or Greece!
0
