ATEMPT Clinical Trial - Roll Call
Comments
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TTfan - so happy to see you easing into the "new normal". It must feel great to actually challenge your brain again. I feel like mine has turned to "mush" over the last few months.and am ready for my schedule of medical appointments to slow down enough to allow me to focus on something other than BC.
MaggieCat - you are getting so close...how exciting! The finish line is in sight, so hang in there.I also take probiotics (along with quite a few other supplements) and swear that has helped my immunity. Haven't had a cold in over two years and used to have 3-4 colds, ear or sinus infections every year. Keeps my digestion regular too now that I seem to have handled the big D I had with infusions 2 and 4.
A week ago I finally had my exchange surgery and am quite happy so far. Love my surgeon who had his work cut out for him with quite a bit of pocket work to do (2 capsulotomies + 1 capsulorrhaphy). Still swollen in a surgical bra with tubes but amazingly I only needed 1 pain medication and had little bruising. Will still need some fat grafting in a few months.
I also began on Prolia for my osteoporosis, am 3 days out and have had no issues at all.
Sending wishes for a lovely weekend to everyone here in the ATEMPT family!
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Wonder if there needs to be a genetic testing thread in the Her2+ section.....
My results are in...... no genetic mutations in any of the Breastnext comprehensive hereditary breast cancer panel. There are other tests being performed on my tissue and blood sample as part of a clinical trial establishing a tumor board.. Those tests will be more comprehensive AND include both germline and somatic analysis.
Are you pursuing genetic testing?????
What I'm interested in now are results concerning Her3..... "HER-3 status is an important prognostic marker of disease-specific survival in patients with invasive breast cancer."
We're on the "cutting edge" so to speak. ( Have to believe DF looks into the nooks and crannies of our mutations).
I think back to the 1950s. My older sister had childhood leukemia and wanted a little sister ... I was born some time later... If only there had been knowledge of placental blood matching at that time, she might still be here and not just a wonderful memory! Guess I'll delete this bit in a few days... thought I'd share with you, my attempt sisters, why I became a research chemist... grew up with the personal goal to find that cure! Attempt is the best thing I've found for me....
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A research chemist--that explains the factual and pertinent articles you come up with! Great for us!
Just finished fourth infusion and will start rads in another month. I'm hoping to be encouraged by this new puppy, Saga.
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Ozoner - You are making great progress, I remember when you were trying to wrap your brain around getting started! Congrats on the beautiful new puppy, they are a wonderful distraction aren't they? My Tibetan Terrier (TTfan, get it?), Cody has been an amazing companion on this journey. When friends and family were all at work, Cody was always willing to snuggle when I didn't have the energy for anything more.
Maggie - I also so appreciate your research and postings! Your sister would be so proud of you! I haven't pursued genetic testing, it was never offered as an option. They told me there wasn't anything of use to Her2 pos folks, as the only reason to test was to determine whether or not to do chemo and it was already recommended to almost all Her 2 pos folks anyway so I was told genetic testing would have nothing to contribute. If there was testing that could help determine a higher or lower recurrence rate, I would be interested as I would seriously consider mastectomy if I knew I was at a much higher recurrence risk than I am assuming. I asked my trial coordinator what they were analyzing in the "study tubes", but never got an answer. I don't know if that information is public or not. I'm not up on the Her 3 research, would love to hear what you know! Have you looked into metformin for non diabetic early stage BC patients? I see some interesting research indicating it may well decrease recurrence rates. Since my Dad was diabetic and my Hb A1c keeps heading steadily upward and almost to pre-diabetic range now despite a healthy and quite low carb diet, I am considering discussing this with my MO and/or primary care doc. Seems like it could be a win win for me. Not that I'm all that eager to tempt fate with more drug side effects!
Mom2three - So glad you are happy so far with your surgical results! I feel I got off so easy with my lumpectomy and SNB. I know it increases my local recurrence rate slightly but since overall survival is unchanged, I went with the easy way out. So many women are going through all these multiple surgeries, fills etc., you all are braver than me! Also so glad you have at least mostly figured out the GI issues!
Wish me luck as I make my official return to work next week! I told them I wasn't ready for clinical work yet (I am an OB doc so my patients need me to be at 100% both mentally and physically). I'll just be doing administrative work to start. There is plenty of that to keep me busy for awhile since I have now been MIA for over five months and my admin position wasn't filled.
Hugs to all, and happy pride week to any who may be celebrating this momentous week with me!
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Ozoner.... Love the puppy!!!!!! Keep those puppy postings coming!
TTfan ....What I hope to learn from the genetic analysis on my tumor tissue is how the other three Hers are amplified (if at all). I'm the instigator pursuing this through the avenues currently available. The easiest first step was to go for the no cost clinical trial (LCCC 1108) establishing a tumor board. The problem with this approach is the "actionable" piece to information sharing. I may have to lobby the investigators to have them view this info as "actionable". I'm really hopeful that they are already on-board with Her 1, 3 & 4 expression as something they share.
Maggie
For your reading pleasure... I would make it less wordy if I knew how!
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The ATEMPT clinical trial is one of two international clinical trials for early stage Her2+++ using T-DM1 ( may be more that I am not aware of...) The other trial (for early stage, N0) is in Germany. Worth noting the treatment period in Germany is for 3 months of T-DM1 + Perjeta; our treatment is T-DM1 only for 12 months. There is a US adjuvant clinical trial with Perjeta but requires 4 positive nodes and uses paclitaxol + Perjeta + herceptin for 12 weeks followed by herceptin only for the rest of the year.
The one, two punch of herceptin/perjeta or T-DM1/perjeta appears to have slight advantages in some somatic mutations but not all or even the majority. Perjeta links to and disrupts the Her3 binding site where T-DM1 (the herceptin part of the moity) or herceptin itself links to the Her2 binding site.
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HER-2 is a transmembrane receptor that functions in conjunction with other members of the type 1 growth factor receptor (T1GFR) family. [7] The T1GFR family consists of 4 known members: HER-1 (also known as epidermal growth factor receptor, EGFR, and c- erb B-1), HER-2 (c- erb B-2), HER-3 (c- erb B-3), and HER-4 (c- erb B-4). The T1GFRs are transmembrane receptors with an extracellular ligand-binding domain, and an intracellular tyrosine kinase domain, that exist as monomers in their inactivate form. Upon ligand binding the T1GFRs form dimers (with themselves or other family members) and initiate a signaling cascade through activation of its tyrosine kinase, leading to cellular proliferation and transformation. [8–10] For breast cancer, HER-2 is the preferred dimerization partner for other T1GFRs, [11] and it exerts increased signaling potency through a reduced rate of ligand dissociation and receptor internalization. [12–14]
Here's the background on what has gone wrong... (only if you want to dig deeper!!!!)
Type 1 growth factor receptor family members HER-1, HER-2, HER-3, and HER-4 expression ....HER-3 over-expression was identified in 10.0% of tumors and was a significant marker of reduced patient breast cancer-specific survival . HER-3 status is an important prognostic marker of disease-specific survival in patients with invasive breast cancer. Accordingly, evaluation of the HER-3 expression level may identify a subset of patients with a poor disease prognosis, and who could undergo further evaluation for the efficacy of HER-3 targeted anticancer agents.Despite the well-recognized role of HER-2 in tumorigenesis and cancer progression, [10] this receptor is only active upon dimerization with other T1GFR members. [15,16] Despite there being greater than 30 ligands that have been identified that bind the T1GFRs, there are no reported ligands that bind HER-2. [16,17] Similarly, HER-3 must also form heterodimers for cellular signaling because it lacks intrinsic tyrosine kinase activity, although it has the ability to bind ligand. [18,19] This reciprocal relationship between HER-2 and HER-3 illustrates the unique evolution of the T1GFR family. [20] In particular, HER-3 has been found to be the preferred dimerization partner for HER-2, [11] and together they form the most mitogenic couplet among all the T1GFR family members. [21]
The cooperative signaling of HER-2 and HER-3 in breast cancer oncogenesis has been demonstrated in multiple transgenic animal models. In an analysis of lysates derived from mammary tumors of HER-2 transgenic mice, protein levels of HER-3 were identified to be elevated when compared with adjacent normal tissue, while HER-1 and HER-4 protein levels remained largely unchanged. [22] Furthermore, in breast cancer cell lines overexpressing HER-2, the blockade of HER-3 gene expression led to the loss of the proliferative state that was similar to the levels observed when HER-2 gene expression was blocked. Interestingly, blockade of HER-1 gene expression blockade did not influence breast cancer cell growth. [23] Additionally, HER-3 has been found to be coupled with potent mitogenic pathways involved in T1GFR signaling. [24]
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I tested negative for the BRCA1 and 2 genes. Testing was recommended because I have two risk factors--my mother died of BC (in 1994) and I am Ashkenazi Jewish. At the time at DF, there were other genes they could test for, but with no actionable results. I wanted information I could use--if I were BRCA-positive I would have had a second mastectomy and probably ovary removal as well. (Waiting for those test results almost put me under--I literally fell on the floor with relief.) But I declined getting tested for the other genes. Just knowing I'm possibly at higher risk, with no specific actions to take to prevent recurrence (or new cancers)? No thanks--that would just mean years of anxiety with no benefit. Since I was tested at DF a year ago, I believe the gene panel has been refined somewhat--but I'm still not sure there are other genes that would prompt doctors to recommend more surgery for me.
Which brings me to this: I have my DF checkup on Wed. I look forward to seeing my oncologist and asking her my list of questions about this and that (including the new genes business). But I dread the mammogram like, well, like something really awful! My anxiety started spiking a couple of days ago. Rationally I know there is very little chance that they'll find something, but who can stay rational in our shoes? I warned my husband I will be a complete wreck. I dread the waiting room--the one after the mammo when you sit there shivering in your little hospital gown with other women all in mortal dread.
On that note, I celebrate puppies, Ozoner, and your pride day, TTfan! It made me happy to tell my husband a few days ago that all the ladies on the ATEMPT forum seemed to be doing better and feeling better.
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I thought I'd post a cute cat picture to match the cute puppy picture. This is our Calvin.
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A cute cat picture to match the cute puppy picture. This is our Calvin.
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Cody (on left) with his bestie Riley0 -
Hi Isabel/Archer. Calvin is so cute! I love the way cats fold up their paws.
Our 8 yr old rescue corgi, Toby, is so jealous of Saga, but I walk in the garden and pull weeds and mostly ignore them to have a pack activity. Someone squealed over Saga yesterday, so that set us back a little. Saga is incredibly smart and I think she's going to be in charge soon.
You know, I was terrified to get a PET scan because my dad died of Alzheimer's, and I just didn't want to know. Then I found out the scan was just knee to thigh, which allayed some fears, and then my insurance didn't approve it. Since it's not required by the trial, the MO didn't order it.
That said, I was feeling just fine when the annual mammogram showed this 1/2 inch tumor! Like a favorite song says, "don't go looking for trouble, trouble will find you." Strangely, that's slightly comforting.
TTfan, I haven't gotten to know any Tibetan Terriers yet, but I know they're charming and energetic. Do you trim yours around the eyes or pull back the hair? BTW, I join the others in celebrating pride day!
I'm glad to have you and Maggie giving an experienced eye to our trial. Very comforting. My fourth infusion had less down time, so the next day I went to see Spy. Two days later I went to Serenity Salt Caves ( not really a cave ), and for the first time this year got to do some butterfly watching from my kayak on the lake. I have an aversion to some foods now, so I'm just going with it. Who knew that I could push away a plate!
I'm spending much of my time reading, so I'll be glad for snuggle time when the pooches stop competing for attention.
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HI All, not sure if you remember me, but I posted here about 2 months ago as I was stressing over considering this trial. I opted for off trial treatment of Herceptin/Taxol. I still follow this thread closely because I felt like I got to know you through reading this thread and I you all seem so knowledgeable about treatment as well. Even though I am not in the trial, I find reading your posts encouraging as I move through my own treatment. I posted the following question on the Weekly Taxol thread earlier and thought I would post it here as well for those of you receiving Taxol...
Has anyone had a dose reduction or had to stop Taxol due to side effects? I have developed a worsening rash, likely due to Taxol. Started around week 4 with a rash on my hands- felt like a sunburn. The rash peaked on days 2-3 and then subsided before my next treatment. At first I thought I was sun sensitivity, but the following week was worse with the rash and swelling. The following 2 weeks it continued to worsen in intensity and spread to up my arms and to my face this past week. The burning and swelling is quite intense at its peak. When I return for treatment the following week, it is visible, but not as severe. This weekend I took pictures of it and sent to my MO today. She wants me to see dermatology prior to my next treatment. Not sure if they will prescribe decadron or if my MO will do a dose reduction. Also not sure why dermatology is weighing in, thought it would be better to see allergy/immunology.
Anyone have a similar experience?
PS- your animals are beautiful.. aren't they the best of friends when we need cuddling? I don't know how I would make it through my days of lounging without my mini schnauzer! Thank you all for all that you share and best wishes to you as you complete your treatment and return to your lives! Congratulations Tfan- I hope your return to work goes well and yes, I am indeed very happy for this momentous pride week---it's about time!!!
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I emailed a friend who went through BC diagnosis and treatment shortly after I did. Her advice about my mammo anxiety made me smile, so I thought I'd share: "Be as freaked out as needed. Then you'll feel even more relieved when the dr confirms you're doing great." This is along the same line as Ozoner's "don't go looking for trouble, trouble will find you"--in a way!
Hi there, Kerryd423--I'm glad you checked in, as I was wondering how things are going for you. I'm sorry to hear about your rash. It's almost insane the variations of side effects that people have on the same drug. How are you feeling otherwise?
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Thanks Isabel! I am doing ok... I guess I am at the point where I am quite tired of this and the end just doesn't seem close enough. I have 5 more weekly treatments left. I know I've come far in completing 7, but I just feel so lousy and can't imagine feeling this way for 5 more weeks... weekly treatments are tough in that there is not enough time to recover before you're back in the chair again. At this point too, the cummulative effects of the Taxol are beginning to show up. In addition to the rash, I have some neuropathy starting in the tips of my fingers and my toes are more painful this week. My MO is watching it closely and I trust she will make adjustments. Last week she mentioned that they will pull back to avoid permanent symptoms. I was happy to hear that.
I will meet with the RO in 2 more weeks to discuss the radiation plan. I think I will have the month of August off to recover and then start in Sept.
Question about hot flashes--- I am getting several each day and night, some are goodies! I can feel the steam coming off my bald head!! Crazy! I had one period just after the start of TH and then with my first missed period the hot flashes started. Do they get worse when I start on Tamoxifen? Do they ever level off or do they continue while on Tamoxifen? I haven't looked too far ahead as I am trying to take one step at a time and not get overwhelmed and discouraged with the possibilities ahead.
At 47, I knew that menopause was coming, but sometimes I get so sad that we are pushed into it so quickly in the midst of this terrifying diagnosis. I worry that I am going to age 10 years in the next 1 and miss my old life where I felt so healthy.
Thanks so much for all your support and wisdom!
Kerry
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Kerry .....Hang in there and congrats on making it more than 1/2 way! You've been reading this thread ... hope it has given a bit of a window into some similar struggles! ( TTfan taking some time away from professional duties when needed, comes to mind.) Not here but elsewhere I have read about the rash from Taxol hell. I'm a bit surprised you aren't already on Decadron. If you can, talk with the dermatologists about facial products she/he recommends for ladies a bit older than you are! That way once the rash clears you can keep that youthful dewy look going. I've found my dermatologist to be an important part of my team. Will be thinking of you this week.. wishing for a successful #8. Interested to learn what the changes are that help you continue forward.
Isabel ..... Scan anxiety sucks! I'm with your friend, you're gonna feel great when the results are in....
Maggie
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Thanks, Maggie. I'm indulging myself in a really bad pre-mammo mood!
Kerry, about hot flashes: I was diagnosed at 51, and had been having hot flashes off and on since 47. My period was coming about twice a year at that point. So I was very close to menopause when I started TDM1, and then I never got my period again. Hot flashes continued off and on, and then since I started Tamox about a year and a half ago, they have been daily. I have had mind-blowing, traumatic hot flashes--just about throwing myself into the Trader Joe's freezer case is a fun memory; also pulling my boots off in an under-air-conditioned movie theater so my feet could touch the cool floor--but i seem to have entered a period of mild, manageable ones. It varies, but for the most part they're not horrible. Honestly, I feel that it's simply become a way of life. I accept them--they are part of me. I will never wear a turtleneck or any kind of sweater other than a cardigan again--I have learned to dress so that I can be as bare as possible when needed. That's how I manage. The one thing I can't manage is the nighttime ones--I don't sleep nearly as well as I used to, but what can you do?
And Kerry, I have had two friends go through chemo for BC in the past 2 years--one had AC, the other TC--and I think both of them thought they'd never make it to the end...and then they did, and resumed their lives without permanent SEs, and both are doing fabulously well. I know every woman's story is different, but have faith that you WILL get through this--and you WILL have your normal life back. In fact, your normal life will be better, because stupid cancer makes you appreciate every ordinary day so much more than you ever did before.
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Hi all, I got off easy yesterday at DF--my mammo was clear. Can't even describe my relief. Only one set of images this time, for the first time ever--I have always been called back for more, which prolongs and intensifies the anxiety. Also the one advantage of having only one real boob is that mammos take half the time. ;-)
My platelet count is STILL not back to normal, but it's high enough not to be of concern. When I started the treatment year my count was in the 150s (the lowest end of normal, I believe); a year after finishing TDM1 it's in the 130s. My MO is not terribly concerned but said she hopes in 6 months we'll finally see a normal number.
Had an interesting talk with my MO about the early detection debate in the world of BC. She said, basically, it's an open question and the debate will rage on. She said she herself is much more interested in exciting new treatments, and that is her focus. She used an interesting phrase--the toxicty-to-efficacy ratio. When I first went to see her she was extremely excited about TDM1 for this reason--low toxicity to the body as a whole, high efficacy (they believe) in preventing recurrence. And this goes for Taxol too versus the former tendency to treat HER2+ women at all stages with TC or AC--lower toxicity, same benefit.
So, beautiful day here in upstate New York. Happy yesterday is over. Onward!
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Fascinating article about Herceptin (and the US and other healthcare systems) from 2009 by a journalist diagnosed with HER2+ BC (sounds like stage 2) in 2007. I googled her--she is going strong.
http://www.theatlantic.com/magazine/archive/2009/03/my-drug-problem/307279/
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Thanks for sharing that article Isabel- interesting and encouraging! It is nice to be reminded, in the midst of intensive treatment, how lucky we are to have Herceptin/Kadcyla
An update on my Taxol rash- they did not prescribe oral steroids for me last week. Instead, I got a topical steroid, Clobetasol, and immersed my hands in ice water for my Taxol treatment. Not just ice packs, but fully immersed in ice water for one hour! It was unbearable at first because my hands were so sensitive to begin with, so I kept them close to the water and kept putting the icy washcloths over them until they became numb and I was able to soak them. The results were amazingly good. I should also note that they reduced my Taxol dose by 20%. In general, I feel better this week. I have more energy and my diarrhea has finally subsided so I think the dose reduction was helpful for me. I do have quite a bit of hyper pigmentation on my arms and face, but the dermatologist was reassuring that she will be able "to help me with that when chemotherapy is completed"... not sure how they fix that but I will be happy to see that resolved!
Hope everyone is doing well!
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Kerry, the ice water sounds very difficult, so it is really good to hear that it worked! Good news about the dose reduction allowing you to regroup and feel better, too. Everybody's body is different and reacts differently to the drugs. That much is for sure.
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I love your picture of Cody and Riley. We still have dog circus here, but at least I'm home to be with them most days.
I've been reading through the posts and finding comfort in everyone's thoughts on this journey we're on. Then I saw where I said my cancelled PET scan was supposed to be from knee to thigh. Make that neck to thigh.
My fourth chemo went so smoothly, and now after two weeks I'm having lasting SEs. Painful feet and hands and tingling, constipation that's persistent and intrusive on life, mouth so dry I can't eat bread any more, mattered eyes, aversion to food, etc. The good news is that these effects are minor. I'm a little worried that fatigue will darken this summer and I'll be wasting the many opportunities.
So, as you can see, I'm ramping up to infusion 5 and adding rads to my life. I'm meeting cousins in Sevierville near the end of August, so my goal is to be up to three days of fun.
Had my second echocardiogram this week and will get measured for whole breast radiation. Kind of hoping my markers will be tattooed as a souvenir of this path in my life.
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I had my first Kadcyla/Perjeta infusion on 7/1/15. They ran it in very slowly and monitored closely for side effects. No side effects during the infusion.mi did have nausea/head ache/ muscle aches by day 4. They start with a loading dose, so I'm hoping the SE will be less next time. How's everyone else doing on kadcla? I'll be on this for a year. Radiation and hormones start in September
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Ozoner, I too had really bad drymouth during my 7 months of TDM1. It was so bad I couldn't have conversations sometimes, and I had to give up certain foods, like peanut butter. I chewed a lot of gum and had hard candies around, though I'm not much of a candy eater. It's distressing to hear that you have a lot of SEs, as I did. Takes a lot of fortitude and optimism to get through all of it.
Swissrn--I hope as you say that the SEs are less next time as your body adjusts. My nausea reaction to TDM1 did not worsen over time--it was pretty much the same low-level queasiness for the first couple of days after infusion.
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hi Isabel. My MO has decreased my Kadcyla due to neuropathy ( and they even have one lower dose!). I've lost six pounds since last time, so he wants me to use the nausea drugs and to eat more protein. If the neuropathy doesn't improve, there's a possibility I could go out of the trial and take Herceptin only. Glad that there are options.
I won't be scheduled for radiation until round six. Thanks for your support. It really improves my perspective.
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Hi Ozoner- While I am not on Kadcyla, I am also having some neuropathy from the Taxol. Enough that my MO held my Taxol last week (I also have a terrible rash from the Taxol so it was a much needed break!) I think the neuropathy has lessened somewhat over the week (my infusion day is Thursday so it's been almost a week since my held treatment). While the tingling is not constant, I still do have aching toes and leg weakness. They will decide this week, which is week 10 of 12 weekly Taxol treatments, if they will continue it. While I am concerned about not receiving the full Taxol course, I am relieved to know they don't push too far in risking permanent neuropathy. I wonder what the thinking is on how far you have to go with the Taxol? I wonder if ER+ and HER2+, more weight is carried with Herceptin and Tamoxifen? I hope to get these questions answered with confidence later this week. I hope your symptoms are not too bad and that they subside with the decrease in your dose.
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Hi Ozoner, I probably have never made clear that I did have TWO dose reductions. This was specifically because of my dropping platelet count, but my MO said the other benefit would be improvement in SEs like the dry mouth and mouth sores. It's starting to be a distant memory--I can't tell you for sure what did happen with that! But that's the good news--you forget about all this after a year or so!
What I would say to both Ozoner and Kerry about dose reductions (TDM1/Taxol) or possibly having to go off the trial/off Taxol is that very small, stage 1 HER2+ cancers like ours may not need to be treated with anything other than Herceptin. They just don't know--no one so far is willing to run a trial in which one arm gets no chemo at all because of the potential risks. But my oncologist felt I had gotten plenty of chemo (7 mos. instead of 12 mos. of TDM1) and I finished the year with Herceptin only--not a single SE. And I am on Tamoxifen.
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hi Kerry. I'll be interested in what your doctor has to say on Thursday. I'm glad my doctor took my info to heart. My husband has serious neuropathy that will never go away, and now I can appreciate some of what he has gone through. And I didn't understand that a SE of neuropathy can be stumbling or staggering. I did that a couple of times before I thought anything about it.
This has been an adventure I never expected to take, but it makes you examine your life. Isabel, I'm glad the hard parts of this fade. Talk to you guys soon!
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Hi all, I think I accidentally turned off email notification. I was wondering why y'all were so quiet! I'm sorry the Kadcyla seems to be causing more SE than everyone had hoped. I mentioned this group's experience to my study MO in San Francisco and she was surprised. But then she kind of minimizes any SE I mention, so I'd bet most women stop telling her stuff eventually.
I'm pleased to report that 4 1/2 months post Taxol I only notice the neuropathy when my hands or feet get cold. Otherwise I don't notice it at all. So it can improve relatively rapidly. I did get all 12 weeks of Taxol, but my MO was fine with stopping early if the neuropathy had progressed much more. I also had rashes, but they responded well to topical steroids and Clindamycin gel so never needed a dose reduction.
So happily surgery, chemo and RT are all already starting to fade in my memory. Haleleuiah! I do get a couple days of fatigue and mild diarrhea around days 2 and 3 after each Herceptin dose, but nothing like Taxol, so I don't get too bent out about it.
The hot flashes are still wretched though, gotta complain about something, right! I tried and then got off Effexor- too much nausea and it didn't end up working that well anyway. I'm now three days in to a trial of Gabapentin which is helping my sleep a lot so far. Yayyy! Between the meds and an industrial strength fan, as in "hold on tight Cody, the hurricane is coming!", I have slept through the night without waking up drenched for three nights running, absolutely a new record since Dx last September. Daytime is still interesting, I get some odd looks at work as I turn red and drip sweat onto the desk in front of me! They love my new chemo curls though! And actually, so do I, a vast improvement over baldness!
Isabel, I'm so happy for your clean mammogram! My first won't be til November (6 months after RT). I know I'll be a wreck even though all our odds are so very good. Unfortunately I have no faith in odds any more.
Kerry, hang in there - you are at the low point when Taxol really catches up with you! It does and will be better very soon! But it does suck now I know. Pity parties are 100% acceptable and even recommended:-).
Be as well as you can all!
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TTfan, it's fantastic that you're feeling better other than the hot flashes. I do refer to myself as the official Hot Flash Queen, but it sounds like you've got me beat. Just wanted to reply quickly to your comment about no longer trusting the odds. My husband found an article by a woman with stage 2 HER2 (I posted it somewhere up this thread) in which she says that, before Herceptin, the chance of surviving after a HER2+ diagnosis was a coin toss, and with Herceptin, it's 95%. So of course that makes me think two things: Surviving for how long? And will I be in the 5%??!!! There are times when I do go down into that dark space, but then I shake myself like a wet dog and get on with it! Also I don't really understand statistics anyway--who does, other than statisticians?
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Hi everyone! Love reading the posts here so very much. So helpful and supportive. Taxol was held again for me today. Neuropathy has improved, but not enough for them to consider giving it to me again today. The rash on my arms is still quite significant and not responding to Clobetasol. The thinking was that another week of rest would give me better chances at tolerating another dose next week. They would like to get 2 more doses if possible. I am so thankful that they are cautious. I just had Herceptin today and feel fine. Came home and went for a 2 mile walk. Met with RO today also to discuss planning for radiation. He told me the best thing I can do now is exercise! I figured it is one thing I have control over and can only make me feel better. I've never been one who loves to work out- but I like long walks and I got a Barre work out DVD for muscle strengthening. I will give it my best effort.
Ozoner- yes, stumbling and imbalance is also a symptom for me, though improved with holding treatment for one week. I went for my walk today, but was not able to last week. It surprised me that when I go for treatment they ask if I am fatigued, have pain, and check vital signs and labs but never routinely ask about symptoms of neuropathy. I think they really should do more education on variable symptoms of neuropathy and assess for them at each visit as it is so important to catch and monitor early. I read a study that found patients who were experiencing lasting neuropathy never mentioned their symptoms while in treatment (either afraid to mention or didn't know it was a symptom to report), so treatment continued leaving the patient with significant impairments. Oncologists who minimize symptoms can be doing a disservice. I know they want to be optimistic, and there are great reasons to be- but not at the expense of leaving a patient with an impaired quality of life.
TTfan- Nice to hear from you again. Happy to hear your neuropathy has faded. Are you taking Tamoxifen? Thanks for sharing the humor in your hot flashes...they are so bizarre and random aren't they? Mine are not severe, but I expect they may increase once I start Tamoxifen. I am glad you are enjoying your chemo curls...I will look forward to that. For now I am enjoying my bald head in the heat of July and have even gotten brave about going out without my scarf or wig. My son told me I can rock a slick dome so I feel just a little badass! Thanks so much for sharing all your encouraging words about life after treatment. This Taxol break has been a welcome one and even if I do have to start it again next week, I can see that I do start to feel normal once it is stopped.
Isabel- My RO told me 97% today...and my thoughts were exactly that "for how long?" But yes, you are so right- we just have to change our thoughts and know that we will be monitored closely; we will become more aware of our health and maybe establish better habits physically, emotionally and spiritually which will lead to a better quality of life. Yes, it stinks to put your life on hold for a year and endure treatment. But I sincerely believe that this experience can enrich your life in a way like nothing else. It's been humbling to allow myself to be cared for; to receive unconditional love from my family and friends. I know that I will have a greater understanding and compassion for the patients I take care of. I will gladly take a 3-5% chance of recurrence in exchange for the positive changes this will make in my life.
Bless you all...I hope you are all enjoying a beautiful summer evening.
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What a treat tonight... reading updates!!!! Thanks. Got through # 11.... 6 more to go!!!! Before the infusion ( scheduled for mid-day) I had to face walking into the imaging center for a repeat CT scan.... re-imaging "lung nodules" seen off to the side (but worth noting) during my pre- radiation heart scan in March. NO change and no plan for future imaging... Geez Louise, I thought I might be walking into how to make one equal four! Damn this journey stinks!!!! Ya'll just don't know how much it means to log in here and see your triumphs....( and then Bloom County comes back into my morning.... life is good...)
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