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New members- say hi!

New members- say hi!

Posted by Lacey_adminCCS on May 25, 2020 7:57 pm

Hello to the new folks who recently joined us.

What brings you to CancerConnection?
Do you have any questions you would like to ask someone who has been there?
How did you find CancerConnection?

me123‍, starshine1ca‍ , Bc123‍ , Sherronlee‍, FrannyMandrous‍ , Grammasu‍ , Jen M‍ , Lealea‍ , Pamela‍ , WonderWoman82‍ , Doc‍, biblio‍ 

Re: New members- say hi!

Posted by biblio on May 25, 2020 8:14 pm

Hi --just revisiting my cancer links and did not know if I had previously officially belonged.  As with most of us we have more time to enlarge and visit our various support groups.  I currently have one dear friend with pancreatic cancer and another with colorectal cancer.  Both metastatic and non operable at this point.  Finding out about their cancers and how best to support them and their caregivers is now a priority for me.  

Thanks 
 

Re: New members- say hi!

Posted by Brighty on May 25, 2020 8:28 pm

Welcome biblio‍ .  What a great friend  you are! I'm sorry  to hear about both friends cancer diagnoses.     You can simply reach out to them and inquire if they need anything.    If you live close enough you can drop meals or other things at the door step.     Just be in touch with them and that will make them happy.     They are lucky to have you.     
Help is out there. All you have to do is reach out.

Re: New members- say hi!

Posted by Bunnylee on May 26, 2020 3:05 am

Hi there I'm happy that there is someplace for me to go for advice and just nice people to relate too.  This is the first support group i have ever joined but i feel that with all that's going on i need help to deal with my fear and depression.  I have been thrown in the deep end of the pool without knowing how to swim well that's what it feels like.
I'm grateful for any help or just to chat.
I look forward to meeting as many of you that are interest....... oh dear i guess i should let u know that I'm not the one with cancer but the car giver of my husband who is also very scared of what is going to happen and if he's gowning to live to tell the story.
Well thanks for listening 
From Confused and Depressed
Bunny lee

ps I hope i have posted properly im also new at following forums  ekkkkk

Re: New members- say hi!

Posted by Runner Girl on May 26, 2020 6:29 am

Bunnylee‍ ,

Welcome, I'm sorry for what brings you here.  Have you looked at the forum for Caring for Someone With Cancer?  

Cancer is a scary thing.  I was diagnosed with breast cancer in May 2018.  I completed all treatment and am doing well.

Feel free to investigate all the forums, I'm sure you will find helpful information.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: New members- say hi!

Posted by Elsie13 on May 26, 2020 11:18 am

Hi biblio‍ and Bunnylee‍ .   Glad you have met Brighty‍  and Runner Girl‍ 

Maybe jorola‍ and Cynthia Mac‍ will also give some suggestions on being a caregiver. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: New members- say hi!

Posted by Lealea on May 26, 2020 11:47 am

Hi there!  Since being diagnosed with breast cancer in February this year I’m looking for others that have and are going through the same experience to gain wisdom from them!  Grateful for this site where we can connect and share about our cancer journey.  No one wants to have cancer but knowing we are  not alone gives hope, and positivity to fight this and live as fully as we can.  My new saying is “I’m making lemonade out of the lemons life has given me”.  Trying to make the most of a “sour” situation 😊. 

Re: New members- say hi!

Posted by Cynthia Mac on May 27, 2020 7:27 am

Hello biblio‍ And Bunnylee‍ , I’m caregiver for my 80 year old father who has metastatic lung cancer.

To continue your analogy, Bunnylee, I’d say, “Come on in, the water’s fine,” but as you’ve quickly learned the “water” can be as thick as quicksand somedays, or it can have a pretty nasty undertow! And, it’s very, very important that we keep swimming.

I have no doubt that you will find help and comfort here. There are discussion boards for various types of cancer. If you tap the word “discussions” at the top of the page you’re reading, it will take you to the main Discussions page, and on the right hand side you’ll see a list of specific types of cancer. Click on the applicable one, and it will take you to a series of discussions about that cancer. You can also use the search function on the site. It’s pretty good if you’re looking for a specific topic, say a type of medicine.

We aren’t too picky about where you chime into a conversation, but it is helpful if you give your posts a subject line that will be easily searchable, and you’re encouraged to start a new topic if you can’t readily find what you’re looking for.

Have a look around the site when you have a moment, and if you want to tag another member, just type the @symbol right before their name (as I just did). When you do that, they’ll get a notification that they’ve been mentioned, and most times, we’ll get back to you fairly quickly.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New members- say hi!

Posted by Arctic Apple on May 27, 2020 11:36 am

Hi Lealea‍,
Nice to connect with you. I too was diagnosed with Breast Cancer in February 2020. Interesting how life goes eh? Would love to hear more of your story and chat with you. 
Hugs Without Bugs,
ArcticApple
Hugs Without Bugs, Arctic Apple

Re: New members- say hi!

Posted by jorola on May 27, 2020 3:18 pm

Hello biblio‍ and Bunnylee‍ 
Caring for the ones we love is a precious job that we do out of love. However it is a hard one and mentally and physically draining. Because of this we must always first take care of ourselves. I know that seems backwards but trust me, it is not. If we are not well, we are not able to care for the ones we love. Then things begin to fall apart and we become overwhelmed easily, stressed, depressed. It is called caregiver burnout. I burnt out trying to do it all myself. It is not recommended. It can be avoided though. This site has wonderful people to talk to and excellent resources to use. I encourage you to talk to other caregivers. Here are some links to some resources I found helpful and maybe you will too:
Supporting someone with cancer - https://www.cancer.ca/~/media/cancer.ca/CW/publications/Listen%20First/32100-1-NO.pdf
General information on caregiving - https://www.cancer.ca/en/cancer-information/living-with-cancer/caregiving/?region=ab
Do either of you have friends or family that are able to help you out? Either in person or virtually? Now's the time to build up your support network. Don't be shy. We all need a helping hand now and then. Teamwork is the best approach to this.
Open communication is important. It really helped me to have someone to talk to. I also talked openly with my husband. We shared what we were feeling about his cancer. No, it wasn't always easy but t helped us get through it together.
 
Live, Laugh, Love

Re: New members- say hi! Benefit of Chemo question.

Posted by Lealea on May 27, 2020 4:16 pm

Hi again.  So I’m slated for DC chemo.  Haven’t started yet.  They said it gave only a 3% benefit.  Wondering how to process that....is it really worth doing the chemo.  Also slated for radiation and hormone treatment.  Thoughts?

Re: New members- say hi!

Posted by Essjay on May 27, 2020 5:12 pm

Hi Lealea‍ I think it’s great that you are thinking about your treatment. It’s your body and it’s up to you to decide the risks and benefits and what you want.

Theres a few ladies who have been through some of your same conundrums recently KerriKerri‍ , happyhiker1‍ and AngelaC‍ all had to make the decisions about the benefits of hormone treatment or not, and Arctic Apple‍  and Nightowl‍ mulled over radiation or not.

I had a different breast cancer to you, aggressive, and at age 49 it was a case of throwing everything at it because I had one chance to get it done. So I had lumpectomy, chemo (dose dense ACT) and radiation, and some bone treatments for 5 years after. Having been through the treatment as a healthy young person, I actually found it not too bad - I exercised all through, stayed well, and I have recovered well. It was for me about 18 months out of my life from surgery through treatment to feeling more or less my normal self (or at least my new normal). I’m ditching the bone meds after 3 doses due to the side effects...

Radiation was ok - I have mild cough that persists and likely now is with me forever. But my lung function is excellent for my age - I run 30k each week, workout, hike etc.

I can’t speak to hormone therapies because my cancer was not hormone driven, but from what I hear, you have to work with your oncologist to find the drugs that suit you. A few ladies who’ve experienced this are @wendy tea, @runnergirl, and @kims1961 (and suddenly I can’t tag them)...

With hindsight would I do it again? If I was 75, I don’t believe I’d go through chemo - it was tough. And I have continuing side effects. It’s funny how when they take you through the risks they seem unlikely and minor ‘5% patients have ongoing neuropathy, 1% get cancer from radiation, 5% have heart problems’ etc...They don’t tell you that your memory will be crappy, what neuropathy feels like in winter, that chemo might screw your colon up forever. 

It’s your body, your choice. 

Good luck, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New members- say hi!

Posted by Nightowl on May 27, 2020 7:08 pm

I’m not sure I’d go through the ACT chemotherapy again for the 5% possible benefit.  At the time (late last December) I had no hesitation as I felt all options to beat this thing should be taken, and I could do it - bring it on.  But now, 5 months later, having only been able to tolerate six of eight rounds (and that was with a blood transfusion mid-way) and having big-time neuropathy, I don’t think I’d do it again. My last chemo session was May 5, and I was so thankful when my oncologist called it a day. But then I’m 66.  I am also diabetic and though I’d never had neuropathy before, perhaps you are more prone to it as a side effect from the PACLitaxel than a non-diabetic.  Hmmm, I wonder if anyone’s ever done a study on that.  Anyway, I hope the neuropathy subsides - I know there are no guarantees - and it is more than unpleasant.

I did decide to go ahead with radiation (16 treatments) in July, as my radiation oncologist determined it increases my chance of non-recurrence of that particular cancer at that site by 14%.  I’ve heard both good and bad reports regarding radiation.  I have to learn to hold my breath for 25 seconds as the radiation will be close to the heart.  However,14% is a good number, and worth it, I think.

i don’t know what to think about hormone therapy:  I’m supposed to go on Letrizol (sp?) eventually.  I’ll cross that bridge when I come to it.

As Essjay said your body, your decisions.  Who knew you would have to make so many???

Re: New members- say hi!

Posted by Arctic Apple on May 27, 2020 7:48 pm

Hi there,
I appreciate everyone’s perspective here and like so many have already said, my body my choice which is both good and challenging. Essjay‍ you mentioned you have a slight cough now from radiation, I don’t think I’ve really thought about the side effects actually effecting me on a long term permanent basis. Those stats are always for the other people right?!  

That’s the challenge for me right now thinking of my options, which side effects will I experience, will they last, if so for how long and do I want that risk? Or any risk that comes with treatment? Seems like when I ask for perspective, everyone has a different take and most seem very decisive. I’m really struggling with my options and not sure why I can’t be more clear with my choice. I’m usually very clear, succinct and decisive. If the Drs would just say this is the best course of action with the least side effects that give the best results I think I’d jump all over that. I’m laughing at myself as I write this cause I realize if I didn’t have any choices I’d feel frustrated with that too. LOL! 

Not that I’m a people pleaser, but it does matter to me what people think, so I want to be certain I’m doing what’s best for me and not what I think others may want me to do. As a mother and Apple(grandma) I’ve always taken care of others and lead the charge to help, assist, be positive and perky making sure everyone’s experiences are positive too. Now it’s time for me to take care of me first, such a weird twist for me. I’m reaching out to those I take Mentorship from, hopefully this leads me down my own path of choice to where I am feeling balanced with my cancer treatment decisions. 

Thanks for listening, this has actually given me a direction to focus on, look at and explore further! 

Hugs Without Bugs 
Arctic Apple
Hugs Without Bugs, Arctic Apple

Re: New members- say hi!

Posted by Cynthia Mac on May 28, 2020 8:04 am

Lealea‍ , When my dad was faced with his options for treatment, the extra percentage sounded insignificant, too, however when you put it into perspective with the starting number (the chance of recurrence without additional treatment) it was maybe a bit of a factor for him.

The oncologist told him that if he didn’t have treatment, he had a 50% chance of the cancer coming back, but with chemo, he could drop that by about 5% to 45% chance of recurrence.

At his age (at the time late 70s), I wonder if he would have made a different decision if his chance of recurrence without treatment had been, say, only 15 to 20%.

It’s a very personal decision, and I hope your heart will help guide you to yours.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New members- say hi!

Posted by KerriKerri on May 28, 2020 8:52 am

Hi @Lealea, I am one of those people seriously considering no follow up but I had a 'best possible  outcome" s far as I am concerned plus my age, (almost 74) is a factor. I already live with many of the issues listed as possible side effects and so I am seeing this as getting much worse with treatment. It becomes a quality of life issue as well. I am awaiting a hard copy of a specific report from the hormone oncologist; I have had a very snipy conversation with the radiation oncologists nurse; they really do no like you questioning them.

If I get another 10 years of life, that will be a most respectable age and I am not sure that I want to live with the immediate side effects let alone those that linger for the next 5 or 10 years. All the treatments in the world is no guarantee cancer will not return there or someplace else. It's a roll of the di.

One thing I did do was I read journals and I went back to some of the original posts and read peoples thoughts and experiences as  they went through the various stages. Some of  them go back quite a way and the thoughts and experiences helped me decide.

Like I said, I was given excellent odds and combining it with my age, this looks to be my path. I am still waffling a bit; I may change my mind. People my age understand. Others, perhaps not so much.

Just don't stop asking questions.

Re: New members- say hi!

Posted by Grd56 on May 28, 2020 9:13 am

New member, diagnosised on May 1st with Stage 4 inoperable Melanoma cancer.  Unfortunately over the previous 7 months 6 doctors at three different hospitals had missed the symptoms of cancer and thus when they reluctantly did an ultrasound guided biopsy they discovered it was cancer and not cellulitis which is what they were treating it for.  After a bunch of further nuclear test they determined it was in the lymph nodes in both side of my groin, in the lymph nodes in the stomach area and the group of lymph nodes by my left collarbone.  They started me on Tafinlar and Mekinist on May 7th so I am three weeks into this treatment.  Due to Covid-19 all the clinical trails for new treatments are closed and will not open for a while.  I have been told that it will be 4 months before they can do another image to see if they have slowed the progression of the cancer.  Anyone with experience with this type of cancer and treatment?

thanks

Re: New members- say hi!

Posted by amyr on May 28, 2020 9:22 am

Hi Lealea, I'm about 1/2 way through my DC. I have early stage breast cancer, 2cm lump with clear margins, hormone positive, Her2-. I was surprised (and disheartened) to hear they recommended chemotherapy, it was my biggest fear. The recommendation was based on my oncotype test - my score is 26, so just above the threshold for high risk of distant recurrence. My oncologist said chemotherapy would provide an absolute benefit of reducing my recurrence risk from 16 to 8%, so I guess much higher than yours. I really struggled with it because of all of the potential side effects and some of them from what I read potentially permanent (like neuropathy). I am also seeing a Naturopathic Oncologist, so was hoping all that I'm doing on that end would reduce my recurrence and I wouldn't need to do chemotherapy, but I didn't feel certain and there isn't the research to back up what NDs see in their practice. In the end I did my processing and listened to my body. I wanted my body to say "na, we got this" but ultimately it told me it needed all the help it could get. It was a hard, hard decision. My oncologist helped me understand that some of the side effects (1% risk of developing a second cancer) is not for breast cancer. She checked with her colleagues on the reading of the oncotype studies, and I felt like they were giving me good advice. One of the things that pushed my decision over the edge is that my oncologist said that they are only able to "manage" distant cancers that recur, there is no cure. I wanted to be cured, I wanted this to never happen to me again, to the highest degree I could manage. I will also have radiation after and then tamoxifen for 5 years. I'm managing the side effects well and am still able to work part-time, cook, clean, exercise and enjoy life most days. I wear the ice gloves provided by BC Cancer to prevent neuropathy, and bring my own ice packs and put my feet on top of them during the treatment. The worst symptoms I've had are feeling fluish for about 48 hours and it just zaps my will for everything, but I just rest and it passes quickly. I'm now completely bald and that's been tough but I got myself a wig ahead of time, and just bought a few hats and I know I'll get through this too...at least everyone else has bad hair and is wearing masks in public so it's the best time of all to be going through it I think in that respect. Best of luck with your decision. Ask lots of questions, do your research, lean on all of us here, to do what you need to feel confident in what you decide.       

Re: New members- say hi!

Posted by ashcon on May 28, 2020 12:30 pm

Hi Grd56‍ 
I'm glad you found this site. There are quite a few folks who have also been diagnosed with Stage 4 Melanoma, so on the plus side of this diagnosis many, like Char3xSurvivorMelanoma‍ and mallan‍  may be able to share their experiences and answer questions you may have.

Feel free to explore these places as well:
Discussion Forum: Skin Cancer
Living With Advanced Cancer.  On the right on this page, there is a brochure you can download. 

I'm sorry that your cancer was not diagnosed earlier. I remember feeling so angry when my breast cancer was missed on my routine mammogram and was advanced and aggressive by the time it was caught.
You think you are doing everything right to stay ahead of any health concerns, and we put so much faith in our doctors and our medical system, but even our docs are human and can not catch everything. 

I'm glad your treatment started so quickly.  How are you faring with your treatments so far?
---- "Nothing ever becomes real till it is experienced." ----

Re: New members- say hi!

Posted by happyhiker1 on May 28, 2020 1:58 pm

Essjay‍  Hi Essjay, I'm intrigued by your mentioning a cough due to radiation. I just finished 15 rounds of radiation for my left breast BC, and before the final two sessions felt like I was getting a scratchy throat, or at least having to clear my throat more often so canceled a treatment fearing either covid or a treatment side effect. But when I consulted with my rad-oncologist, she said she had never heard of any kind of side effect that would cause that kind of symptom right away, so I stopped worrying. Also, on the official documents I received, there was no highlighting of that kind of side effect, except 'rare' (cough, fever, difficulty breathing).   I am just wondering, how would rad lead to coughing and in your case, did it start with trouble clearing  your throat, etc?? I hope I am worrying for no reason, maybe this is just dry weather related??

Thanks!
Happyhiker 1

Re: New members- say hi!

Posted by Essjay on May 28, 2020 2:04 pm

happyhiker1Arctic Apple‍ my cough if minor - an irritation in my upper chest. I didn't have it before radiation, but I've had it ever since. It's not stopping me doing anything, just annoying. 
Triple Negative Breast Cancer survivor since July 2018

Re: New members- say hi!

Posted by Grd56 on May 29, 2020 8:01 am

It has been three weeks since I starter treatments.  I have had a few side effects but the worst is a cough that will not go away and joint and muscle pain.  I understand that you just need to keep going and hopefully the side effects will become less pronounced.

Garry

ashcon
:
Hi Grd56‍ 
I'm glad you found this site. There are quite a few folks who have also been diagnosed with Stage 4 Melanoma, so on the plus side of this diagnosis many, like Char3xSurvivorMelanoma‍ and mallan‍  may be able to share their experiences and answer questions you may have.

Feel free to explore these places as well:
Discussion Forum: Skin Cancer
Living With Advanced Cancer.  On the right on this page, there is a brochure you can download. 

I'm sorry that your cancer was not diagnosed earlier. I remember feeling so angry when my breast cancer was missed on my routine mammogram and was advanced and aggressive by the time it was caught.
You think you are doing everything right to stay ahead of any health concerns, and we put so much faith in our doctors and our medical system, but even our docs are human and can not catch everything. 

I'm glad your treatment started so quickly.  How are you faring with your treatments so far?

 

Re: New members- say hi!

Posted by Yuliya on Jun 1, 2020 4:03 pm

Hello everyone, I was reading your forum for a while and dreading the moment of registration because I thought the moment  I will register I will belong to cancer world. So my name is Yuliya ( it is like Julia but in Russian)  I will be 42 in July. I dont have diagnosis yet, but I have very classical symptoms of inflammatory breast cancer. Thanks to cancer connection  I find more information about this type of breast cancer on IBC network site. I will join discussion on your breast cancer page.

Re: New members- say hi!

Posted by Wendy Tea on Jun 1, 2020 7:33 pm

Yuliya‍ Welcome. I am so glad you found the confidence to post. We often have members who find it isn't cancer after all. In any case I was relieved to be handed over to the cancer clinic because I knew they would do their very best to save my life. You will be in good hands.  Please let us help and support you.
Healing takes time and opportunity. Wendy Tea

Re: New members- say hi!

Posted by WestCoastSailor on Jun 3, 2020 12:31 am

Bunnylee‍ 

Are you finding some comfort in the forums? While it is your husband that is the one with cancer, you as caregiver seem to have taken on the role of gathering information and getting connections. Do you have a treatment plan yet? Have you had a chance to talk to the oncologist? I understand that for some Initial visits that a caregiver is being allowed to accompany the patient?

What kind of support are you looking for?

Angus
My story: http://journey.anguspratt.ca