Starting Chemo September 2015; join us!
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HI
Anyone seeing a Naturopath?
I just saw my second one and wanted to compare notes. He said to hold off on any antioxidants for 3-4 weeks post rads and is having me take zinc, unda 28 and a prenatal vitamin on top of my vit d and calcium and garlic. He prescribed Unda28 for my joint pain that may be form rads or lupron.
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Ozigran - Congrats on finishing Taxol! Treatment-free periods are indeed like a mini-vacation.
Third blood test this week gets me off 2x daily Lovenox shots - yeah! If the multidisciplinary team meeting next week recommends mastectomy, I'll have to go back on for five days pre-surgery. But that should be it. Like Ozigran, for now I'll gratefully take a treatment break until then!
I know we're getting thinner here are people finish treatment - best wishes to everyone with procedures or radiation yet to come.
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Hi Beautiful Warriors!!
Just checking in!! I don't write much but I read all of your progress,experiences and successes. We all have come so far as we have been through a lot!
Im 9 weeks post chemo and 4 weeks post double Mastectomy surgery. I have the expanders and have been through 1 expanding session. Im feeling pretty good with the occasional tingling like feeling on my chest wall. My brain isn't quite clear and I forget the most basic things sometimes.
I will start the 30 treatments of Rads in April and Im glad to read that it isn't as bad as chemo. Hair is all in and growing I was actually glad to shaved my legs the other day! and super happy to have lashes and eyebrows back!!
Looking forward to this weekend, going to Las Vegas with the family, my daughters play a High school softball tournament there and I'm their #1 fan!
Thank you so much for all your post, photos,videos etc, we are in this together and you all have been a huge part in this process for me.
Happy for your progress and continue to stay strong and kick cancers butt!!
Hugs
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I check in everyday but I am not posting because I am kind of down in the dumps. My arms are still giving me problems. I went to a friend who is a massage therapist it helped a little bit. Mostly I am experiencing a lot of post chemo/surgery & Arimidex side effects and probably a little PTSD from it all.
Wishing everyone encouragement and good healing.
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Exercise - PTSD is an excellent analogy: I feel like I've been dragged through the brambleberry hedge backwards. Keep taking care of yourself. You are tough and smart and you WILL make it through this.
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Hi ladies. I don't post often but I still check this board regularly. I'm healing from my alnd with the help of PT. I have my rad sim next Wednesday and scheduled to start on the 30th.
I think of you all daily and pray for complete recover for everyone. Warrior on ladies.
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I start radiation Monday March 14th, thanks for all the information about RADS
EVERYONE HAVE A GOOD WEEKEND!!
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Ladies I am starting to think that this is nerve damage or extreme neuropathy. My arms and hands are starting to tingle during the days and because of the Arimidex I can't grip anything even to open a jar.
For those of you with neuropathy post Chemo what can I do about it? Do you still do Glutamine and protein? I have Gabopentin but only at night. I am wondering if there is anything I can try to see if that is what is causing this before they order an MRI and EMG which will be in three weeks if it doesn't clear up.
In looking back I started to get this condition one week after I stopped taking Juven(glutamine) and protein because the dietician told me I should get off of it .
I went to gentle yoga and the cancer center and did the stretches fine no worries then two hours later I am driving my car and my hands start to tingle and go numb. I am still getting numbness and tingling at night even with the gabopentin.
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Exercise - Your symptoms sound worrisome.
I still have neuropathy (toes, balls of feet, fingertips) 6 weeks PFC. (I am not on Arimidex or anything else at the moment.)
A few weeks ago, I did a thorough Google scrub of reputable cancer treatment sites (Sloan Kettering, Mayo, Dana Farber, etc) to see what was recommended for post-chemo neuropathy. Frustratingly, I couldn't find anything actionable I could try. (I have leftover Juven and pure L-Glutamine, but it sounds as though those have not been found useful.)
Sorry I couldn't find anything - I hope you have useful diagnostics and therapies that work for you.
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exercise -- the fingertip numbness I got from chemo is a constant bother, and is in all my left fingers plus my right thumb and second finger. The "comes-and-goes" numbness you describe sounds more like the "other" numbness I've had in only some of my left hand fingers and thumb since '05 --- that one is due to nerve compression in my cervical spine (neck) from degenerative changes that pinch the nerves (blown disk, bony overgrowths). That one flares up from sleeping in a bad position, or stressing my neck during the day. When it calms down, it is completely gone. I am no neurologist/chemo doc/etc, but you might ask your doctor to check out your neck? I hope whatever is causing your symptoms you get a good therapy for it soon (((hugs))
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Exercise - I have similar residual neuropathy as MNLisa. I am still seeing an acupuncturist. I don't know whether to give credit to the treatment or not but my neuropathy has lessened considerably. Might be worth a try. I am no longer take glutamine but still take Vit B6. I wonder what role arimadex is playing. I have been on Femara for approx 3 weeks. No probs so far. Doc thinks it is better tolerated by her patients. Prayers to you that this resolves. How annoying it is.
So nice to read of the progress being made by so many. May all of our lives return to normal- at least a new healthy and happy normal-,very soon. Hugs to everyone...
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I honestly believe I am dealing with this:
Breast cancer and its treatment can trigger post traumatic stress disorder:
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Hey Tessu! I can't see the article but I have ptsd from one particular dr appt during which we got bad news. I keep replaying it in my head. My DH and I cried in each other's arms I don't think we've ever done that before. In retrospect, it was a pretty raw moment that ended up bringing us closer together. Sigh. How does your ptsd show itself?
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Tessu - Thanks for the referral, I read the article. The findings reinforce that your symptoms are legitimate and I trust you will continue to get help. <<HUGS>>
(For those who can't access it, the article summarizes findings of a Feb study in which a very small percentage of women had full-blown PTSD from BC diagnosis. But over 80% of women post-diagnosis and pre-treatment and over 50% one year on, had at least some serious PTSD symptoms, including intrusive, unwanted, negative thoughts and trauma.)
Shelly - I've had (very unusual for me) sudden weepies and DH and I have also had a couple of joint crying sessions. I've been surprised by the emotional aspect of diagnosis and treatment.
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Hi friends! I've taken quite awhile to get caught up on all that happened since I left for the cruise, but it was wonderful. I'm sorry to hear about the continuing struggles so many of us are having with the chemo side effects. My neuropathy has mostly cleared up, but it flares if I'm on my feet for more than a little bit. The joint/muscle pain is pretty miserable, though, and has me moving like an 80-year-old with arthritis. I really hope this does go away eventually!!! I'm glad that at least I'm not having the continual pain even when I'm resting, though, so there's been improvement.
I've been surprised at the residual trauma symptoms and depression since finishing chemo. I thought I'd be happy to be done with that part and gearing up for surgery (which is this Friday), but I really struggled. I came across studies without meaning to, and I'm feeling so frightened and unsure now. And I REALLY don't want to go into surgery with that mindset. Grrr.
I'm also horribly missing my mother-in-love, who died very unexpectedly (and much too young) last April. She was an OB/GYN head nurse, and I have wanted her professional and personal support so much since this all blew up. I find myself crying for her fairly regularly.
Please pray that I have a pCR and no evidence of node involvement during surgery on Friday. I really need that to feel at peace with this situation.
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Oh, and while my hair has grown at a pretty good pace, I've had to shave it down several times because it's SO PATCHY!! Right now I have a bald area at the very front along with two areas at the crown (like where cowlicks are). It looks ridiculous. GRRRR. When will it start coming back all over my head already?
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Amy - Thanks for updates, I have been thinking of you.
You are not alone in being buffeted by trauma and depression. Tessu posted a summary of a study that found over 80% of BC patients at diagnosis and over 50% one year on have some PTSD symptoms. It made me feel much less weird for still having the weepies, even six weeks post-chemo.
You will be in my thoughts Friday - all good wishes for your results. <<hugs>>
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I think that's what I am starting to have .... Haven't worried like this before. Not sure if this is normal feelings dince it's been a year since chemo and the fears are even stronger now.
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Amy glad you checked in. I was thinking of you and sending you prayers and gentle hugs for Friday. 14 weeks pfc and I still have the same neuropathy in my feet and the old bones ache that makes me feel 90 not 45. And yup it is weird being done esp as a triple neg with no further treatment. I find myself lost at times and trying to catch up esp at work. It's like I finally got off the merry go round and everyone else is spinning around on another ride already. I do feel weepy at times and I swear I have ptsd from treatment. But life is good and I'm thankful for so much.
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I really appreciate everyone posting. Amy Praying for you. I am sorry I can't write to each of you guys but It chears me to hear from all of you.
I love when everyone checks in. We should have Check-in mondays or something like that. Sorry I am not much use in the check-in dept. I am typing with two wrist braces as my hands have completely become useless. I am going off Arimidex. I want to be careful what I type because I don't want to scare anyone off AI. I hope everyone has better Side Effects than I am having. This week has been a low point of low point. Not as low as Chemo but dog low. I have pretty much lost use of my hands. They are numb off and on night and day and the Arimidex Cramped them painfully. I went off a week ago and the cramping is gone but the numbness is still persisting. I will have an MRI in April if this doesn't clear up but I found reports of Carpal Tunnel or numb hands caused by arimidex. It wasn't a lot of women but it does happen.....lucky me
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Sending prayers to you CarolinaAmy. Will be thinking about you on Friday. Shopgirl - I am not giving up on getting rid of this dang neuropathy. Here's praying for continued healing until it is no more! Thank you for the good reminder to remain thankful; such wise words.
Oh exercise! You can't seem to catch a break. Getting off that arimidex sounds like the ticket. So glad that cramping is gone. Next will be the numbness. Hang in there. You are stronger than these crummy side effects!!! I second your sentiments about checking in from time to time. It is great to hear from you all.
Peace and continued healing to everyone!
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Just got off the phone with my surgeon: the consensus of the multi-disciplinary group is that I don't need a mastectomy.
Next up: aspiration of this stubborn internal bleed residue later this month before starting six weeks of radiation.
Exercise - So glad you're off Arimidex and that the cramping at least has gone. Hope you are better already as you read this note. Big hugs, hang in there, brave one.
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Lisa That is probably a huge relief. I think it is easier if they let you have the decision about your breast and that you can have a lumpectomy means that Chemo was a huge success!!! yah you needed good news after that whole hematoma stress.
Amy thoughts are with you!
Southern it is all going to come in like crazy now. Once mine hit that point it filled in quite nicely.
so I am switching to Femara. Not sure the plan yet I just got the prescription today. Also the hospital offers a massage for $35 an hour so I went last week and that was a nice treat. My MO is hoping that my arms clear up on their own. tessu thanks for the advice about my neck and arm. It just came on all of the sudden like instantly one night
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Southern - Yes, I am 100% at peace with their recommendation. My surgeon was out of town on vacation last week and he spoke to my MO before leaving town. They both had a week to "sleep on it" and independently came to the same conclusion (as did the other professionals). Nice hair growth, thanks for sharing! At 7 wks PFC, mine looks about like yours did at 8.
Exercise - Thank you! Yep, surgeon emphasized yesterday that he was very pleased with the lumpectomy pathology results. I hope the Femara treats you better and that your remaining SEs clear up on their own. Do keep us updated, you are in my thoughts.
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My hair is definitely coming in, except it's not doing much on the bald spots!!! If you do a 'facepalm', the area your fingers would cover is nearly bald, along with the back of the crown. It looks ridiculous.
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Waiting to be called in for my sim. I'm anxious/nervous to get this started.
Big hugs to you all!
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Southern, I am so glad you hair is finally starting to grow in! I cried over losing my shortish hair, but losing your gorgeous long locks was probably much harder. I am looking forward to more pics as it thickens amd grows out
My hair had a growth spurt during the 4-week break after last chemo but it seems to have skowed dine since startinng Hercetin.
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Hi ladies, I hope you're all feeling well today!
My hair is just starting to grow in. Unfortunately, a lot of it is gray. I'm thinking about emailing my hairdresser to ask how long it has to be before I can color it. I wear my wig to work and if I'm out and about. But at home I just go without. My 3 yo son has taken to telling me everyday that he can see my hair growing longer...lol. I'm also thinking that as the weather starts to get warmer, I'm really going to hate wearing the wig. So I hope the growth picks up enough for me to at least color what I've got in case I want to go without the wig.
Question - for those of you who have started radiation - how's it going? I start on Tuesday and I'm nervous. They will be radiating my left axilla and my left breast. It's frustrating that while I have my first appointment scheduled (which apparently the first appointment only do at 11 am), they keep pushing back on my request to determine the time for my ongoing appointments. They keep telling me that we will work out the ongoing time when I go in for my first appointment on Tuesday. I'm annoyed because I've asked if I can have a first thing in the morning appointment to be less disruptive to my work. I also need to be able to tell my job how much time I will be out of the office and their inability to book the ongoing time is preventing me from working things out with my boss. I also need to pick my son up from preschool every day at 5:30 so I can't have an end of day appointment (my husband does morning drop off and I do pick up) They keep telling me that a first thing in the morning time shouldn't be a problem, but they won't book me a time. I'm sure I'm annoying them with my need to plan. It's really, really frustrating.
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edwsmom, I'm right with you on the hair status. Mine is very gray. A coworker used to be a hairdresser so i asked her how long it had to be to color it. She held her fingers up to show me and it wasn't much. Definitely less than a half inch. My wig is getting much itchier as my hair is growing.
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edwsmom, my hair is coming in mostly gray, too. My oncologists said no coloring until at least 6-9 months pfc (!). I forgot the reason, though, sorry; I'm still forgetting too many things these days. The gray doesn't bother me so much as the brain fog :
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