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Sadiej

Hi Marla! I'm really hoping that getting my meds locally will work out too. I tried this a week ago via my primary care doctor and it was pretty much a fiasco. That's why I'm glad Claoh prompted me to get help though the hospice program. The only other thing I would be nervous about is my ability to get the meds on time. This is a small town and getting special meds for things like cancer pain is very difficult.

On another note, that would be really great if that vaccine could work out for you! I personally do not qualify for various reasons (metastasis to the lymph nodes, metastases to the brain, metastases to the sacrum) but I don't remember hearing anything from what you told us that would disqualify you. Anyway, here's a snippet of the letter that she sent me. I pray that this all works out for you. We need some good news about now.

"I understand that you are also reaching out about the trial to provide your friends with triple negative breast cancer more information. I always refer patients to the National Cancer Institute's public website at clinicaltrials.gov for more information on specific trials. These web pages include information such as a detailed description of the trial, recruiting status, and eligibility criteria. You can search for the study directly on the website. The clinicaltrials.gov ID for this particular study is: NCT04674306 The full title of the study is "Adjuvant Therapy With an Alpha-lactalbumin Vaccine in Triple-Negative Breast Cancerhis website will provide you with all the information that is publicly available about the study.

There is one more thing to note. At this time, we have completed our initial cohort for enrollment onto the triple negative arm of patients not currently receiving Keytruda (pembrolizumab). However, as we continue to review study data, new enrollment slots may become available.

This trial is only available at Cleveland Clinic Main Campus. If your friends believe they may be eligible for enrollment and are not currently patients at Cleveland Clinic, I would encourage them to reach out to our Cancer Answer Line at (216) 444-7923 to become established with a Cleveland Clinic Breast Medical Oncologist."

It's interesting that they will be giving you a lumpectomy. That really is good news because that means it hasn't spread. The most they'll take out would be the sentinel node. I had a lumpectomy for my ductal carcinoma in 2013 but I never did plastic surgery. That left me with a really long divot down the side of my breast. They also took my sentinel node which was clean. Did they say anything to you about the possibility of recurrence? Just curious.

I found what your doctor told you about not changing the outcome was very interesting. Did they expound on that? If I read that right, your doctor was saying that it doesn't matter if you do all the chemos or not? I wonder if that's because yours is not metastasized? You sure come up with some great subjects lol! I can see where spreading out a few days for recovery would make a lot of sense. I've been secretly praying for you that this does not develop into peripheral neuropathy. I've got enough damage to my nerves from the last chemo that I really didn't see how I was going to get through this one without a lot of help from my doctors. On a hopeful note, if it is the beginnings of peripheral neuropathy, a lot of people recover from that after they finished chemo. I just happened to be one of the ones that did not. Not sure about the shortness of breath and fatigue. As you said it could be steroids. Please keep us in the loop on that so that if we have any signs like what you're having we'll know what to look for.

As far as fatigue goes I can totally relate. I'm actually starting to annoy myself is it seems like I sleep all night and then sleep most of the day. I'm planning on talking to my palliative care doctor on Monday about that. Either that or I'm going to have to start calling myself Rumpelstiltskin lol. Okay maybe sleeping beauty but I'm really not feeling the beauty part myself personally. Seems like we all just keep trudging along to whatever our destinies will have for us. And yes it is rough for every one of us! It's hard to believe that in April I will have been battling this for an entire year. Okay that was a depressing thought! Yep I'll just keep trudging along. :)

Hugs!

marlakeeth

Thank you for he information, my question is where is this located please? Thank bunches

Sadiej

Hi Marla!

This is taking place at Cleveland Clinic, Cleveland, Ohio.

Claoh I pray that you are okay. Keep checking to see if you are on the boards.

Heading out today to our hotel so we don't have to get up at 4:00am to make the first appointment. It was a little rough for me last night. My temp spiked to 100.2• and my oxygen levels were at 91-93. I sent a quick message to my palliative care doctor to let him know what was going on.. I was going to go to the emergency room this morning if things didn't improve but I woke up with no temperature even though my oxygen is still a little low.. Marla you were a nurse. What do you think of this? I am coughing up thick white/yellow phlegm from my bronchial tubes that I have been taking Mucinex for. Methinks it's an infection (bronchitis)? Can't believe that this is happening after my bout with pneumonia last month. Sigh.

Pat

Sadiej

Ahh the best laid plans....

So no, I did not make it to the hotel last night nor did I make it to chemo or any of my other appointments today. The situation being what it is with me pretty much took me out of the picture for getting up to Cleveland. Finally got to a clinic today to discover the fact that I had a severe upper respiratory infection and was given antibiotics and steroids. She also wants to see me back if it isn't better within 5 days. That was a tough go being at the clinic, half the time I thought I was going to pass out from lack of air lol. I assume it's going around though because there was a lot of people in there with the same symptoms I have. So now I just take my meds, try to get better and once more try to get back on the chemo horse. sigh. Looks like a pretty potent antibiotic too. That's fine by me if it'll just kick butt and take names. Tired of being sick.

Just a quick note to catch you up with what's going on in my life. I pray that you all have a great day! Hugs

marlakeeth

OH Sadiej,

I don't know how you are managing all of the issues that have come your way. I pray for you!

I hope that you are feeling better now. As for me, I skipped one extra day between infusions to see if I felt stronger, not really. The neuropathy in my fingers now includes some of my palms and my feet are numb feeling. I feel like I have bees buzzing in my shoes and fingers. Tried wrapping a few presents which was a bit challenging, but I made it. Forget tying bows! I also have started to have aching in my legs from the hip down. Tylenol helps with this, I assuming it is chemo-related. A quiet Christmas is planned, nothing special, just my husband and me.

I hope that you all have a quiet, peaceful, and restful Christmas! Love and prayers to everyone.

Sadiej

Afternoon ladies!

Marla I am so sorry to hear that you are beginning to show all the symptoms of chemo -induced peripheral neuropathy. I was really hoping that you didn't get it. It tends to get worse over time and doesn't ever go away. Sorry for the bad news. I've had it now for 10 years. I definitely don't like the pain in my hip that goes down my leg but all of it makes doing normal things hard. You'll have to figure out how to do things that came easy for you before. I just feel so bad that that happened to you.

For my part I continue to get worse last Tuesday to the point where I had to go into the emergency room. It seems that I still have some residual covid along with double pneumonia and sepsis. Over the past 24 hours my right arm with the lymphedema is swollen even more and is warm and red to the touch. I just came back from a DVT test to check for blood clots but one of the nurses mentioned cellulitis so I will just have to wait and see. I've been really tired I guess for obvious reasons now. So I'm still in the hospital and I don't think I will be out before Christmas the way things are going here.

Claoh we miss your posts! We are both praying that you are okay. Please let us know what happened at all your meetings this week. A really big huge hug for you!

Pat

claoh

Sadie and Marla, sorry to hear how you're struggling more at this time.

Saw the oncologist yesterday and had a little berating to not have tackled this last March with the chemo program. He feels it is very likely that after blood work and a pet scan we will find I am truly in palliative care without remission. That is ok, as that is what I was going in aiming at. So come mid week I will be reaching out to hospice to sign out so I can sign on for the blood work and pet scan. Ideally, it could be accomplished in a 2 or 3 week period, but then don't know when the actual chemo would start.

Today was truly an unusual day as I slept a lot and had a very dry mouth the whole day. The breast was much deeper pain than usual also but got through it. Am changing my dressings more often as there is a lot more leakage, but no infection.

Tomorrow our older son and family are coming in and staying until Wednesday morning. Looking forward to spending some time with them.

Take care and will check on you in a few days.

Much love and prayers coming your way.

Sadiej

Merry Christmas to all the wonderful ladies on this board! And gentlemen of course lol.

So it looks like I will be getting discharged from the hospital today, a nice little Christmas present for me. I have been in here since Tuesday but they believe I'm well enough that I can go home now. I will catch up with my primary care doctor when things open up tomorrow. Christmas for me is basically going to be snuggling up in my blanket and sleeping I believe, but that's not so bad.

Claoh I hope you're enjoying your time with your family. You too Marla, and everyone else on this board: have a very merry Christmas! May you find love and peace in this coming year.

LovesPrimes

I hope you all had a wonderful and memorable Christmas. I truly paused and enjoyed the time with my family and I am proud of myself for doing so. I have been dealing with sky-high anxiety the past couple weeks and my BP was 184/96 at pre-op last week. My primary care doctor put me on Xanax to help me with anxiety through the surgery and I'm finally here, day before my surgery. I think the next couple weeks will be the hardest so it may be a while before I get back here. Just wanted you all to know I'm thinking of you!

Happy New Year for all of us.

marlakeeth

Loveprimes, will be thinking of you and sending prayers and good wishes. Everything is in God's hands now. Be at peace, I know that I will be with you. too!

claoh

OH Love, you are in our prayers and will lift you up every time I think of your tomorrow for your peace and healing, surgeons guided hands.

Sadiej

Lovesprimes you are truly in our prayers as your name is lifted up before God. Know that He holds you in His tender care. Be at peace.

claoh

Good morning. Hoping all went well with Love. Looking forward to hearing from her.

Latest on my end. I got out of hospice on Thursday in order to pursue blood work and pet scan. Blood work was taken yesterday (Friday) and my pet scan is scheduled for Monday, Jan 8 with oncologist follow up on the 11th.

That is when we will decide whether to zap this tumor in hopes to shrink it, or say the cancer has consumed too much of my interior body to proceed.

I am still very mobile and getting out as much as possible. Even played a little ping pong yesterday afternoon!!

It really is so surreal, not in fact vs fantasy, but fact vs. reality!! I really don't know what I'm trying to say, perhaps trying to grapple with how long does this go on. Right now I feel it could be a good while as the only real symptom is the ulcerated tumor. Yet, I have to think if this is growing so fast on the outside, there has to be significant growth on the inside, but really don't feel any evidence of that. That is what is surreal!!!

That also makes me way to procrastinating when it comes to "planning", getting my ducks in a row. I want to write letters to husband and sons to have at end. I need to order vials, floating container for ashes. This is really where our roads take different paths. I've set my course to have an end to be prepared for and you have set a course to get back to your pre cancer lives. For all of us, we are searching for quality in our lives. We have all expressed our faith in God and in His almighty peace and guidance. That is our main common denominator.

May you find peace this day and every day we share.

Sadiej

May this new year find all our contributors and readers the strength to continue the fight and the faith to believe that there is hope even in our darkest moments. May you all find peace in this coming year. I thank you all for your continued support as we walk our paths we have chosen.

Lovesprimes, a special heartfelt prayer goes out to you as you recover from your surgery. We wait to hear from you and hope that you are doing well.

Marla and Claoh, thank you for your friendship and great advice (and jokes!). It has been a great blessing to me to have you here to help me along my path. A prayer for you both that you are greatly blessed and to be at peace in this coming year.

Pat

claoh

Good morning and welcome into 2024!!

Yesterday was a rough day, one of those when you wonder if the meds are working. I actually gave myself an additional half a pill in the evening. When we got home from some friends I was shocked to see that the tumor had grown quite a bit during the day. Most likely the reason the pain was more intense.

This morning I woke up a little pensive realizing I passed into another phase of melancholy for the road I've chosen. Again, not regret but deeper dose of reality for the road ahead.

Sadie, Marla, how are you doing with the pain?

Sadiej

2024. Let's see what that brings. Claoh I think I understand what you're saying. Reality does take away the facade. Not that there isn't hope. It is that hope that gives us the strength to continue on regardless of the course.

I had a meeting with my oncologist last week. Also with my palliative care doctor. I would say that for the most part my pain levels are being controlled even though it seems I am taking some high doses of certain meds to make that happen. My big issue is actually everything that's happened to me within these last couple months. The covid-19/pneumonia, the double pneumonia, the multifocal pneumonia, the acute respiratory failure with hypoxia, the sepsis, the cellulitis on my lymphatic arm, the internal bleeding which really didn't seem to have a source, nausea while eating, the abdominal pain and on and on seem to all boil down to one root cause: chemo. The cellulitis was from a bacterial infection. I am immunocompromised and, as my oncologist told me, my body is not taking well to the chemo. In the last 2 months I have spent four and a half weeks of that in hospitals. So then you may ask where's your hope? There is hope in taking a different course of action than what was previously defined when I first started treatment. Actually there will be two choices. One of them is by taking an oral dose of chemo. The second one is even more interesting. I had blood work drawn and sent out to a lab that looks at your genetic structure to try to determine which of approximately 70 different genetic structures could be firing up mtnbc. Once that is figured out they will do a program for me that would be specific to whichever type is causing the issue. I won't kid you, it was tough getting to this point. I was always exhausted. But now I have done my blood work and tomorrow will be setting up an appointment for a new pet scan to see exactly where we're at and any improvements from the previous treatment. So I have these two items that give me hope. Once my oncologist gets the results of the pet scan back we will sit down together and figure out where to go from here. The chemo pills was an interesting idea because that would allow me to roam around the country and not have to be right next to a Cleveland Clinic somewhere to get treatment. The other one is even more interesting and I am waiting until all these results are in so I can find out more about it.

So as you can see, my issues are definitely more than pain and my outcomes will determine my destiny. I know this really doesn't explain what you're really looking for and I apologize for that. The biggest takeaway that I hope you see are the possibilities.

Pat

claoh

Thanks Pat for your openness. I really don't have any expectations for my questions - just want to know how each of us will cope with different situations. Today was a little better than yesterday, but still feel the pain level has ramped up a bit and now feel that relates to the growth of the tumor.

As you stated, there are so many variables that play into our care than the cancer itself. Also, as you share I am conflicted as to what is the best course and which is greater evil: chemo or tumor growth. Am really looking forward to seeing results of pet scan to see scope of cancer spread internally.

I also purchased a kit to test for UTI at home as today I have burning when urinating. That is a first. If comes up positive, will contact doctors office tomorrow.

LovesPrimes

Hello, my friends, and happy new year. I, for one, give 2023 0 out of 5 stars, do not recommend. Our year started with my husband having rotator cuff surgery and a week later we lost both of our dogs in traumatic way. We said it would be long time before we’d be ready for another dog. Then mid-March, I got my diagnosis after weeks of having to fight with insurance just to get a breast MRI. (Thank God that my GYN fought for me because my cancer would NOT have been found on mammogram.) Shortly after my diagnosis, I told my husband I didn’t want to go through cancer treatment without a dog. So, we got a 5-month old rescue from the Caribbean islands and named her Zoey, which means life. I’ll see if I can figure out how to add a picture here. She truly has added so much life to us in a dark season that has included 3 surgeries in less than 8 months.

The surgeon said (reconstruction) surgery went well. I’m home now and trying to stay ahead of the pain. I have to be in a hunched over position at all times for at least 3 weeks. I have 4 drains and a Prevena negative pressure vac on my abdomen. Getting around is quite difficult; right now, I can’t imagine how we go to my first post-op appointment Tuesday. I guess that is a worry for another day.

I feel like my (reconstructed) breasts are smaller than before cancer. Husband says they’re just shaped differently. I’m trying not to judge until I’ve healed more. And I know it will be difficult to accept them until I get tattoos, which is at least 4 months down the road.

My husband had his first “I can’t do everything!” Moment yesterday, less than 24 hours since we’d been home from the hospital. He didn’t get to shower, didn’t take his own morning meds until after 3 in the afternoon. And today he’s adding some work-from-home. I know you all have even more you’re going through but I worry and wonder who takes care of our caregivers?

For today, we are trying to get him two 2-hour blocks of time to just work. (That’s about how long my bladder can hold out; I have to have help to get to/from bathroom.) We can hopefully gradually increase as days go on. We’re thankful that both of our employers are being understanding and supportive.

I’m thankful for you, dear sisters, and praying for God’s will and loving care for each of us.

marlakeeth

OH my Lovesprimes! This is so intense!

I remember you saying that the dr was taking fat from your abdomen.

How is the pain?, and your sleeping?

you are a brave soul and hope you are happy with your plan. Sounds like it.\

I wish you comfort and quick recovery

marla

marlakeeth

Welcome to 2024, sort of, another day ahead!

Last week I could not take chemo #6, just beat to the ground with the neuropathy in my fingers and toes and I feel exhausted. The oncologist gave me the week off but will return for Taxol # 6 this Friday. Seems like the numbness in fingers and toes has subsided somewhat. Still, the shortness of breath remains. Have been trying to walk around outside to get some strength back. My legs have been aching every day from my hips down, muscular-skeletal pain I guess. Another one of those "side effects". My heart goes out to Lovesprimes, glad that she has a great husband!

Not much else going on right now, just taking each day one at a time. Glad that Sadiej is at least home.

Marla