Unfortunately things are going downhill
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Thanks ladies, I really appreciate all the support I get from all of you. Y'all make me feel like I'm not alone doing this and it means so much to me. I went yesterday evening to have the rest of my hair taken off. I held it together until the very end, then I couldn't hold my emotions any longer and cried. But on the bright side, at this point I do like my new wig so much better than my first one. It looks so similar to my own hair that I'm even amazed. DD with Down syndrome only asked if I had gotten a haircut and said it looks nice. I still haven't told her that I'm bald. She doesn't understand and it will freak her out. Last time she was a nervous wreck over me not having hair and just knew I was dying. So for now, I'm not telling her. Thanks again ladies for holding me up in prayer. Today is a new day and I'm thankful I am here to see it. Enjoy the moment. Prayers and well wishes to all of you
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Kandy - Put on your party wig and enjoy the moment. Nothing else to do, really. You and your family are always in my thoughts.
>Z<
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You're a true Mom, Kandy, protecting your daughter in the midst of your pain. So glad you found a nice wig.
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Well, I got an advanced copy of the PET scans on DVD. I've spent the last couple of hours pouring over it and comparing it to the previous CT scans. Surprisingly, the PET scans are much easier to read as the radioactive isotope really makes the cancerous sites light up. All the previous areas are still lighting up - no shock there: Spinal areas, hip, pelvis, psoas muscles, etc. But I also saw some new areas of activity, particularly in the sacrum area, and it looks like lesions on the kidneys and adrenals are definitely spreading. I'm not going to freak out about it yet because, heck, I am NOT a radiologist. God help me, maybe it's something else.
They did extra views of my lungs (which concerns me)...once again, not gonna freak out yet, but stuff showed up in parts of my lungs that are VERY bright and consistent with the brightness of the lesions in my spine and hip/pelvis areas.
I'm not surprised by any of this. I was told that there MIGHT be progression since we reduced the dosage and scheduling of the Xeloda to minimize some of the debilitating side effects and give me a little better quality of life. And since I presented at initial Dx with SO MANY areas back in April, this is to be expected.
I'm grateful for the last two and a half months since the Xeloda dosage was reduced. Other than the usual fatigue and occasional diarrhea, I've been doing pretty well, considering where I was 10 months ago. That may change dramatically because they'll probably put me on a much stronger chemo now.
So, that's where I'm at this afternoon. Just gonna have to brace up for the next phase of this adventure.
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Hang in there Lita. I expect you can read the scans and you are dealing with progression. But you have 9 lines of chemo to choose from, all very good at dealing with cancer on the move. Have a cup of tea and get ready to deal ... one would like longer breaks between the drama.
>Z<
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Hugs to you LIta. I know this is a scary and uncertain time for you and your family. Know we are pulling for you and if there's anything we can do to reassure you, please let us know.
With love and hope Lita
Amy
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About hair loss. My wife lost her hair when on A/C (twice). Her hair's always been straight. Hey, it came back a lighter color brown and all curly. Strange?
Wife had PET scan Monday. Haven't heard from oncologist yet so it's a good sign.
Progression with one spot on spine as of November 2016. Oncologist wants to wait a few months to let it grow big enough for a biopsy. Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has three cancers, one ER+ PR+ HER2-, 100% estrogen, grade 1 and inside that was ER+PR+HER2- 30% estrogen grade 3 plus the triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
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Lots, so sorry that you feel like you are fixing to hear the words progression too. None of us like that word. You hang in there, surely your MO will have an awesome plan. Prayers for you and for all the other ladies out there.
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Hi Lita...sending peaceful thoughts your way
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Posted results on the bone mets thread. Yes, there's progression, but it can be managed. Go to the bone mets thread for more details.
Colon stuff is of some concern, as is progression to lower spine, but won't repeat here.
Thanks for all your good thoughts 😃🤗😅
I'm calling it a PARTIAL STAY OF EXECUTION for now.
Good thing, by God, cuz the urn I wanted to order is NOT in stock. Still gonna reserve my niche at Alta Mesa b4 the price goes up, however.
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lita-thank goodness progression not as bad as you were thinking, but still-UGH!! I like your statement about the urn. Sometimes I panic a bit that I won't get everything done. Been trying to sort things out around here. I will need two urns, because half of me goes to one location, and half to another!!! Hugs MJH
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MJH, it really ticked me off when one of my friends practically chided me for wanting to get an urn so soon. I mean Gees! We have Stage 4 cancer. Who knows how much time we have left?! Certainly some of us might have years to live, but those of us with multiple mets, especially organ mets, may only have MONTHS left. We live from scan to scan.
Just had to vent.
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If you don't have cancer it's hard to understand that we walk along a precipice. You look great, so keep that in mind. But every one here gets it!
>Z<
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Lita, just remind your friend that it's a good thing you started early since your urn is out of stock.
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kandy....i'm thinking of you and sincerely hope that you are holding up well
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Kandy, I've been thinking of you too. been of for awhile moving but grateful to be back and seeing how everyone is doing and reading the wise advice. I'm glad the chemo isn't too rough on you. I cannot imagine how I will do when I eventually have to lose my hair. it is one of my best features....Mike, thank God for small favors that the kidney tumor was benign. It is amazing what the human body can endure. Prayers to you Lita and thankful for your "stay".
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Hi Kandy. thinking of you.
>Z<
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Thanks ladies for checking in on me. I'm hanging in there. I went through a spell that I was very sick and lots of different symptoms. My MO finally figured out it was the Naproxen that I was taking was making me feel so bad. I came off of it and am doing much. I have accepted the wig now, just another part that we have to deal with. I'm on my third round of chemo now, I have it next week, then my week off, then I am scheduled for my pet scan. That will definitely tell us rather we continue on this path. Keep me lifted in prayers that this is working. I hope life is treating all of you well. Enjoy the moment
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Kandy - I am sorry that this is rough, but my understanding is that it can be rough. IOW, nothing unusual. I feel confident your scans will show it was all worth it.
>Z<
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Thinking of you Kandy. So glad you found an angel. Good luck with the scans next week. Give Harper an extra squeeze.
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Kandy, Great minds think alike! I noticed this thread had been quiet for a while and have been wondering how you are doing. Thank you for the update, but so sorry to hear you have been sick. And lost your beautiful hair. We are amazing beings, sometimes I think we can get used to just about anything. I will be thinking of you in the weeks to come and hoping you get some good news on that PET/CT. Hope you have been able to spend some happy times with little Harper. I'll bet he is growing like a weed as my Nana used to say! Sending hugs and hope.
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Thinking of you, Kandy. I hope you are enjoying some baby therapy with Harper.
Enjoy your wig.
I didn't know it at first, but I knew a lady with Alopecia. She always wore a wig, but it looked natural. She was my favorite cashier at A&P. I didn't know she had Alopecia until I saw her at the Zombie walk without her wig. She made a great Zombie. She's doing great, but she moved away.
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Thinking of you Kandy.
>Z<
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Hello Ladies, I hope all of you are doing well. My scan is on Monday and I see MO on Wednesday so we are close to knowing if this is working. My tumor markers have continued to be up, not a good sign at all. My back has been hurting pretty bad, sometimes I feel like it's going to break in half. So with knowing both of those things, I'm not very optimistic that this has done any good. I am still praying for the best. I will certainly check back in with y'all and let you know the outcome next week. In the meantime, take care and enjoy the moment.
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Praying for your complete healing tonight.
>Z<
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Kandy,
I've been on/off the boards lately, so lost track of how many are doing. I have been thinking of you.
After my first 2 attempts with AIs failed & I was put on Xeloda with TMs 3000+, I had the terrible backpain you described, struggled to feel ok with lack of sleep and had no energy to do anything for a while. It took 6 months to get control of TMs and with good pain control planned, I slowly felt almost normal.. so hang in there sis.
You most probably are at that phase.. the chemo kickingg the c-buggers' butt may take some time. Or another is the right treatment for you. You sure still have many options.
Losing hair is crap. Wearing a wig is crap. I know.
The backpain is the main issue. Please consider visiting a pain doc for dealing with it.. I was there, not able to lie down, stand up, sit down, walk without pain and just with new painkillers, I was able to feel ok .. you shouldn't be in pain.
I hope the results turn out great.. the battle is strong which too adds to the pain. Thinking of you.
Hugs
Ebru
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Kandy, Your are in my prayers as I hope for good results for you on Monday. Some people see high TMs while on some treatments and sometimes pain can be from healing. Maybe you will be pleasantly surprised when you get your results. In the meantime, sending big (((HUG))) to you.
Lynne.
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Thanks for all the prayers and continued support.
Ebru, nice to hear from you. I hope you are doing well. I am going to talk to them next week about my back pain. It does get worse everyday. We had tried to switch last month to methadone and morphine but that didn't work out so good. Something was causing vomiting but what I'm currently on isn't working either. I do pray we can get a handle on this soon. You take care.
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Kandy, too bad you can't get medical marijuana...it's the only thing that helps my back pain. Opioids don't even touch it or knock it back.
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Good luck with your scan on Monday. Thinking of you and praying for excellent results. Although my tumor markers are always within the normal range, they go up and down for no apparent reason. They even went after receiving news that I'm in remission. So please enjoy your weekend and keep us posted next week.
Amy
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