TRIPLE POSITIVE GROUP

astyanax66

KasiaK, welcome! I love that this is an international community.

FluffQueen--what awesome cookies!

We had a friend over for home-made pizza and lava cake last night to talk about a Jane Austen role-playing game. We're all big Austen fans, and I'll have time to play before chemo starts...and something to look forward to when it's done.

Hope everyone has a good week!

dee

Trisha-Anne

KasiaK my mother was from Poland. She came to Australia after the war. She was from a small village called Delatin in the Carpathian Mountains , it's now in the Ukraine. It was an area that changed hands a few times during the war.

I have so many memories of Easter with her, and hard boiling eggs and painting them. A couple of Polish dishes I miss especially are (and I can't spell them properly) are pirogi and glompky.

There is a Polish Club here in Canberra and the next time my brother comes to visit, we are going there to have some Polish food 😊

Trish

xoxo

PoseyGirl

hi all, I love hearing about your Easter traditions .

Deni, tell your husband he’s lucky to get Easter treats lol. My husband gets nada! But I did make dinner for my dad and step mum . I think it’s cute you give him goodies!

Suburbs, I sure hope you are starting to feel better. I too have noted little headaches when I wake up lately. They generally disappear when I get up.

Welcome, Kasia!! So glad you found us. I like hearing from women around the world (or western world, anyhow. It would be nice if women in the East could join in, but I guess language becomes a great barrier).

Vicky, I was introduced to a wonderful friend who lives in SC and she talked me through my shell shock. She directed me to this song. As for being a spoiling Grandma, it’s your job!!!! And your meal sounds tasty.

Cherry, speak up if you’re out there...how are you?

I have gotten into felting this year and here are a few cute napkin rings I made. They look a lot better in real life - proportions and colours get a bit weird. But it’s just a little Easter fun...

Jstarling

Posey, are those cuties needle felted? What fun

Juli24

I too have enjoyed hearing all the Easter stories. We had the whole family together which is no small feat even tho they live fairly close together. We see them all often but usually at different times. As a Christian, but can probably apply to other religions/beliefs, I was super angry with God when I initially got my diagnosis. It was okay tho - he could take my anger until it subsided. Then he comforted me when I blamed myself. Today I honestly don’t ask “why” anymore but rather what now. Some days my options suck. Other days the sun shines brighter. I guess, at least for me, accepting what is makes it easier to be In today.

I don’t know how ya’all remember all the names/posts on here! I sometimes forget what I told myself I needed to remember just seconds ago. I do want to say welcome to Kasia - sorry you are here but you won’t meet a better group of women who will support you in anyway they can. Suburbs - I really hope you are experiencing great results from the new antibiotics. There is no one on this thread whose post hasn’t touched me. I am extremely grateful for each and every one of you. Gentle hugs

coachvicky

KasiaK ... Welcome and I am sorry you find yourself here. Like you, I wish I had found this wonderful group of women earlier. I seriously doubt I could have made a successful journey without their support.

Dang! Your English is great. The only foreign language I can sort speak are part of the words to La Bamba.

I encourage you to move everyday. It is the only way I battled daily fatigue. And as SpecialK reminds us all ... hydrate.

Juli24 ... I also struggled in the beginning with the "why." My Plastic Surgeon's wife gave me the booklet "Don't Waste Your Cancer" by John Piper. My question then became "why not me?" I believe that DH and I have made the difference in our friends, co-workers, and acquaintances getting 3D mammograms. I realize that mammograms work about 50% of the time. However, monthly exams and increased awareness at least starting with 3D can be a key to an early diagnosis.

About Easter ... I meant to make a picture of the table and forgot. DH and I loved the lamb. It was not successful with the others so I am glad we had the ham. My DIL said "lamb must be an acquired taste." The grandchildren loves their meal. It included Kraft Mac & Cheese microwaved in the blue styrofoam container. Yep, I have caved when it comes to their foods.

Vicky

ElaineTherese

Vicky,

My family loves lamb, but we don't eat it much because it's expensive. Yes, some people find lamb to be a bit gamey.

Juli,

I was never really angry with God, but I remember feeling very sad and was worried about my sons (who have autism and will never be independent). We all have crosses to bear; ours just happens to be BC.

coachvicky

ElaineTherese I understand! Lamb is once a year treat for us!

Vicky

SpecialK

hap - this is not a new concept, Dr Li has been talking about this for quite some time, I would say at least 10 years. Not to say that it is controversial or alternative at all, as Interrupting the blood supply to tumors starves them. I think it is a fascinating concept. Many who have fat grafting to correct recon defects, or for second stage autologous recon grafts, eat strongly angiogenesis short term to maintain the grafted fat, same concept but in the reverse. Avastin used to be used for breast cancer, but the FDA withdrew approval for its use due to underperformance quite a while ago.

SpecialK

hap - yes, I have watched a number of Dr. Li's online presentations - including this one, and became familiar with his concepts quite a while ago - shortly after my diagnosis and treatment 7 years ag. I am very familiar with Dr. Li's website, and am encouraged by this research. I was not discounting his work in any way, just pointing out that these ideas have been around for a while.

Additionally, I am one who has changed my diet after diagnosis (I follow the Virgin Diet - clean eating, organic where appropriate, no dairy, sugar, soy, gluten, corn, peanuts - I do eat free range eggs), use cosmetics that I have vetted on the Environmental Working Group site, and try to use cleaning products that are either vinegar or baking soda based, or minimally chemical. I will never know if any of this is of benefit long term from a disease standpoint, but I feel a greater level of control doing it, and regardless of whether that is an illusion I am happier doing these things

moodyblues

Posey, I am on Letrozole 2.5 mg and when I get hot or sweaty at all- I itch.  This has never happened to me before and when I mentioned it to my support group, another woman has been having the same SE from it.  It only happens when I get hot though.

Vicky it sure is wonderful to treat our grandchildren to special treats like that.  Yep, I am grandma of the year too...at least in their eyes. 

This year instead of a chocolate bunny, their treat was a cake pop and a Nestle Drum Stick Ice Cream cone.  

Kasia, welcome.  You have found a loving and supportive group here!

SpecialK

hap - no I don't work for this site, or anywhere else, lol! I am a relentless researcher, and I am insatiably curious. I have participated in a number of clinical trials - one a Her2+ vaccine trial, a mindfulness trial at USF school of Nursing, and a number of home based trials related to Dr Susan Love's foundation. I also participated in care for my mom who had hypertension, pulmonary issues, a seizure disorder, and a rare neuromuscular disease in the muscular dystrophy family - she was ill for 25 years, for the last 3 I managed her 24 hour care. My dad, brother, mother-in-law, and father-in-law have all died from stage IV cancer. A close friend had stage IV sarcoma and I walked through treatment with him. Two good friends were diagnosed with breast cancer after me, both single and living alone, so I went to all of their treatment with them. I have gathered a lot of infoalong the way, and have also learned a tremendous amount from this site.

SpecialK

hap - for breast cancer patients as a whole, Ibrance is a great new addition. Unfortunately for us Her2+ folks, it is not currently available - don't know if that will change - I believe there is currently a trial (PATRICIA) where it is combined with the already used Herceptin/Perjeta/Femara, but don't know if any of the results have been preliminarily reported out yet, the trial is Phase II and does not end until 2019. Our options for recurrence or progression drugs are somewhat limited to the ones already in use for early stagers, barring participation in a trial.

PoseyGirl

Thanks for the link, Hapb...I will check it out for sure.

I also hold high hopes for immunotherapy. I believe it is the new frontier.

I have slipped the last week with respect to eating. Sugar remains my greatest weakness. I am thinking of trying to totally kick it. I may try to start with 6 days out of 7 and then go from there.

Thanks, Moody, re: the itchy response. I had a change in brand of AI six weeks ago and wonder if it’s possible that a change in brand can bring on new side effects? I have also learned that some side effects can come into play immediately, and some later.

JStarling...yes, those eggs were felted! My real interest is in the felted painting angle. Here is one image of a wall hanging I did following this great tutorial...

deni1661

Posey your felt work is amazing! So beautiful....I have never seen this art form before. Thank you for sharing your talent with us 😊

deni1661

Hapb - thanks for sharing the Dr Li video and related information. I find this concept really fascinating and watching the video has motivated me to get back on track. Now that I'm not seeing my MO every 3 weeks I find myself not as diligent as I was previously with my diet. It helps me greatly to hear what others are doing to stay motivated with nutrition and exercise. I like to learn and appreciate the hard work you put into sharing this info with us

Specialk, I value your knowledge. You certainly have touched many people in your life by helping them through their cancer journeys. I think what you have done for your family and friends is such a blessing and sharing what you have learned along the way is a true gift for all of us. Thank you for all you do 😊

SpecialK

deni - thanks, it has been my silver lining

Blownaway

On the earlier discussion re Armour thyroid... I have a great PCP who really "gets" thyroid issues better than any endo I've ever run across. She has me on Armour and Synthroid because according to my labs over an extended period of time on just Synthroid, it was determined that I am unable to convert T4 to T3. I am an extremely low energy person (lazy???) and have always been that way. I have also always had insomnia and on/off anemia since childhood. It's an ongoing challenge to my doctor to keep me feeling like I have any energy. Willpower keeps me off the couch. The anemia has been fine for years except during chemo. Anyhoo, hope you find a doctor who will work with you till they get it right. Is it just me or was this kind of rambly??

moodyblues

Posey. I was informef by the pharmacy 6-7 weeks ago that the manufacturer changed, I DID NOT have the reaction (itchiness upon getting hot and sweaty) before that. They said that the med didnt change, just the manufacturer. Vicky or Special let me know that sometimes they change the fillers (I think that's the word they used) and that the filler may be the culprit.

coachvicky

I don't know what felting is.

Looks pretty but I don't understand it.

Vicky

coachvicky

Shout out to Trisha-Anne…!

I have a girlfriend that moved to Australia right after her lumpectomy. She starts radiation this month. Her DH has a job there.

Trisha-Anne… sent me her contact information and my friend is so thrilled!

My friend is experiencing what we have all gone through. That is not understanding why some friends / family wont' check in on her. Trisha-Anne ... how kind of you to offer your contact! Thank you.

Vicky

bareclaws

http://www.gotoper.com/publications/ajho/2015/2015Nov/Effective-Management-and-Prevention-of-Neratinib-Induced-Diarrhea

For everyone who is considering or planning to take a year of Nerlynx (Neratinib) after Herceptin, I found this very informative study about the management of the diarrhea side effect that has been so widely reported. The fact is that in early trials, prophylactic loperamide was NOT given and that seems to make all the difference. And this study confirms what my MO told me. I am very encouraged and not quite so worried about starting this drug.

SpecialK

coach - How beautiful is that?

bareclaws - for some, the addition of loperamide from the outset is still not enough, but I think it has made the difference for many so that is great. Am I remembering correctly that you were struggling to find insurance coverage for the cost of Nerlynx - did you figure that out?

PoseyGirl

thank you, Moody, for sharing that. I've also had a morning headache for 5 days and of course that always worries me. Also chills and wArm flushes alternating. I'm lying down, trying to calm down the headache. Was it you or Suburbs that mentioned morning headaches? And I’m curious how fillers could be responsible for such side effects as warm flushes and headaches? I would have thought it was the active ingredients that do all that?

Thanks for the comments re: felting, ladies...I started one year ago and am in love. Vicky, felting is the process of taking wool roving and using water or needles to tangle and condense the wool fibres to achieve the look you want. Anything can be created, from sculptures and figures to “paintings" to garments and abstract art. I a man attracted to the colours and texture of the the wool. It is also forgiving...you can rip something out or add to if you need to rework. Nothing has ever stuck for me creativity wise, but I knew I needed something. If any of you are looking for something to do creativity wise and are attracted to this medium, I’m happy to share how you can easily get started

I agree, SpecialK, that you so generously offer your deep knowledge to us and others. You and other ladies here are a beacon.

So, today I decided to kick sugar to the curb. My sister is on the Keto diet and has lost 24 pounds in three months. Im not going on the keto diet and don’t need to lose weight, but she’s given me some ideas on how to fulfil my sugar cravings. She also assured me that this craving will end . I love cookies and crackers; those are the only things that are truly my downfall.

It’s lovely to see co͘nnectionṣ being made (Trisha Anne offering to help, SpecialK and Vicky)... to have someone to help you and guide you through all this is so very important.

Here is a sample of something small and “sculpted” ifyou aren’t bored sick of it. I’d love to see your creations too (if you are a maker, share!)

coachvicky

Thanks, I got what these creations are and how they are made. Very, very, pretty.

Vicky

SpecialK

hap - what does your MO say about Tamoxifen for you considering your medical history? My MO did not encourage the switch (I asked about it after five years of AI drugs) because there is thought that Tamoxifen doesn't work as well as AI drugs in Her2+ patients due to the signaling pathways.

posey - thanks! Also, love the felting - so cute!

I have a lot of pollen allergies (actually a lot of allergies to all kinds of stuff, lol!), but I find that in the spring and fall when pollen is rampant that I get headaches almost daily. If I take an antihistamine - usually Claritin - I don't have as many.

astyanax66

Posey, that's AMAZING work! My felted pieces look like bad dog toys, lol. Awesome stuff!

SpecialK

hap - I suspect your MO is feeling that some ER modulation is better than none, and there is also thought to be an effectiveness relationship to levels of both ER and Her2+, so if not strongly one or the other, or both like I am, your MO may feel that Tamoxifen is a viable option.

SpecialK

hap - the majority of older women (post-meno) with breast cancer are not taking Tamoxifen, they are on an AI. The ones on Tamoxifen are usually those with osteoporosis and not on a bone builder and those for whom AI side effects were too much - but I am not sure it is a large enough population to warrant separate stat collection and study. Data collected regarding older women and clot risk would be data that was collected prior to the advent of AI drugs, but it might not be that hard to find. Since your ER percentage is higher I would think that potentially represents your greater recurrence risk.

SpecialK

hap - cancer, for the most part, is a disease of aging. For most of us as the body ages it gets less effective at basic process, partly because of the slings and arrows of life, and partly due to time. Our eyesight diminishes, as does hearing, some people become anemic, etc. The majority of women with breast cancer have estrogen receptors on their breast cells. When whatever the process is that happens to cause breast cancer by damage to your DNA - and it is not the same for everyone, those receptors are then fueled by estrogen. It is not necessarily that breast cancer happens because of estrogen, it is that breast cancer happens for whatever the reason, and whatever estrogen we have available fuels the cancer to reproduce. In the case of Tamoxifen, circulating estrogen - from whatever source - continues, it is the receptor on the breast cell that is blocked. In the case of aromatase inhibitors, estrogen to fuel the breast cell is suppressed by inhibiting the enzymatic conversion of androgens to estrogen. It is assumed that estrogen produced by ovaries is already at a minimum due to menopause or ovarian suppression for pre-menopausal women electing to use medication to stop ovarian function. HRT is linked to breast cancer, but certainly not in everyone who takes it. I don't think you can draw a straight line between the two, but I think you can say it heightens risk, or accelerates the process for some women. The combination HRT estrogen and progesterone was associated with more cases of breast cancer than the estrogen only version of HRT that women who had a total hysterectomy took. There is no denying that AI drugs have side effects, as any drug does. They can cause bone thinning - that has been established, but that doesn't happen to everyone. Tamoxifen, in post-menopausal women, is thought to be bone strengthening though, but again, not universal.