Dis Breast Cancer Survivors Part IV - GAGWTA

Sorry you had to cancel your trip, LMP.
We cancelled our May WDW trip too because my husband needed a medical procedure. I rebooked WDW for July but it’s tentative. Our youngest daughter accepted a position in Oklahoma so we are involved in helping her move from here. Taking her for a quick celebratory trip to NYC first though. It’s bittersweet for me as she is my sweet petite as I call her.

Sending good thoughts for Kendal, Peg.
 
Well, it's been a very busy month. Kendall saw the neurologist. He ordered another brain MRI and a cervical MRI. On Friday, she will have a lumbar puncture with fluoroscopy. They are looking for signs of myelin sheath breakdown and the possibility of Lyme Disease. She had a blood test that came back negative for Lyme Disease. She had two of the six factors, but the doctor said the blood tests are not reliable. It is still a possibility it could by Lyme Disease. She also has an appointment with a tremor specialist at Shands and a neuropsychologist to asses cognitive functioning.

I know it's a long shot, but I'm still praying it's Lyme Disease. That's curable! Kendall is pretty sure it's MS. Whatever it is, we just need to know so she can begin treatment. I think back to my little girl who loved to dance. Now, she's walking with a cane. It was actually easier for me when I was sick. I do the whole cancer thing again if I could just make her well again. So hard to watch her deteriorate.

On a brighter note, I hope you all had a wonderful Mother's Day! Always thinking of you!

Very sorry Peggy to see that you are still going through this and Kendall is still very sick. I had thought you had a diagnosis and moved on.
MS is a tricky one and so is Lyme disease. Then there is Fibromyalgia and that too is difficult to diagnose. All three of these have similar symptoms.
I hope she feels better soon ....
Sending thoughts and prayers your way.
 
Well, it's been a very busy month. Kendall saw the neurologist. He ordered another brain MRI and a cervical MRI. On Friday, she will have a lumbar puncture with fluoroscopy. They are looking for signs of myelin sheath breakdown and the possibility of Lyme Disease. She had a blood test that came back negative for Lyme Disease. She had two of the six factors, but the doctor said the blood tests are not reliable. It is still a possibility it could by Lyme Disease. She also has an appointment with a tremor specialist at Shands and a neuropsychologist to asses cognitive functioning.

I know it's a long shot, but I'm still praying it's Lyme Disease. That's curable! Kendall is pretty sure it's MS. Whatever it is, we just need to know so she can begin treatment. I think back to my little girl who loved to dance. Now, she's walking with a cane. It was actually easier for me when I was sick. I do the whole cancer thing again if I could just make her well again. So hard to watch her deteriorate.

On a brighter note, I hope you all had a wonderful Mother's Day! Always thinking of you!

Prayers for you and your daughter,🙏 hugs for you both. :hug:
DW is doing good, had her 6 month Cystoscopy yesterday and everything was clear. Her oncologist suggested last year she do the test for genetic marker for cancer and of course she had the marker, just means she has the marker and doesn't mean she will ever get cancer again. Pretty well recovered from the double mastectomy last September. Healed really nice. I'm glad that we both have a sense of humor about all of this, makes life a lot easier. We had matching tattoos done in January, infinity cross, red and pink filled. Only difference is mine says, "Your fight is my fight" and that is true. I support her in every way with her decisions. We have a consultation today about the genetic marker and should we tell the kids and how to go about telling them. Getting ready for vacation in another week, taking a kayak trip down the Niobrara river and then on the South Dakota and black hills for a few days. Hoping everyone has a great June!
 
Prayers for you and your daughter,🙏 hugs for you both. :hug:
DW is doing good, had her 6 month Cystoscopy yesterday and everything was clear. Her oncologist suggested last year she do the test for genetic marker for cancer and of course she had the marker, just means she has the marker and doesn't mean she will ever get cancer again. Pretty well recovered from the double mastectomy last September. Healed really nice. I'm glad that we both have a sense of humor about all of this, makes life a lot easier. We had matching tattoos done in January, infinity cross, red and pink filled. Only difference is mine says, "Your fight is my fight" and that is true. I support her in every way with her decisions. We have a consultation today about the genetic marker and should we tell the kids and how to go about telling them. Getting ready for vacation in another week, taking a kayak trip down the Niobrara river and then on the South Dakota and black hills for a few days. Hoping everyone has a great June!
That’s great! Have a wonderful trip!
 


@MIGrandma any recent updates on your DD?

Good morning everyone, thanks Pea for asking about DD. She had her third chemo session yesterday. I imagine today and tomorrow will be her worst days. Each session is getting harder for her to bounce back from. But she is still going to work the rest of the time. Her co- workers all know now as her hair started falling out so her DH shaved her head for her. She wears scarves/caps to work. Her attitude is still wonderful and I know that is helping her, along with God of course. I take supper to them the day after each chemo so I will see her tonight. Hopefully just one more dose of the A and C meds, then four of the T.

Peg - sending up prayers for your daughter🙏
 
Good morning everyone, thanks Pea for asking about DD. She had her third chemo session yesterday. I imagine today and tomorrow will be her worst days. Each session is getting harder for her to bounce back from. But she is still going to work the rest of the time. Her co- workers all know now as her hair started falling out so her DH shaved her head for her. She wears scarves/caps to work. Her attitude is still wonderful and I know that is helping her, along with God of course. I take supper to them the day after each chemo so I will see her tonight. Hopefully just one more dose of the A and C meds, then four of the T.

Peg - sending up prayers for your daughter🙏
That’s exactly what I had. I hope she does ok.
 
Hopefully just one more dose of the A and C meds, then four of the T.
MIGrandma, do the initials stand for Adriamycin, Cytoxan and Taxol? That was the combination, along with a month of radiation treatments, that Marie used 21 years ago. A tough treatment for sure, but it worked.


:hug:'s
 


MIGrandma, do the initials stand for Adriamycin, Cytoxan and Taxol? That was the combination, along with a month of radiation treatments, that Marie used 21 years ago. A tough treatment for sure, but it worked.


:hug:'s

I’m really not sure of tha names of the chemo drugs, just remembered the initials. I’ll have to ask her. I do know she has to have radiation treatments after the chemo. That is wonderful your wife is cancer free for 21 years! I’m praying my daughter never gets it again after her treatments are over.
 
MIGrandma, do the initials stand for Adriamycin, Cytoxan and Taxol? That was the combination, along with a month of radiation treatments, that Marie used 21 years ago. A tough treatment for sure, but it worked.


:hug:'s
Dan, that is exactly the combination I had five years ago. The Adriamycin and Cytoxan were the worst. I was out of it for three days following each infusion. Fortunately, the infusions were spread out three weeks apart. They caused my hair loss. I had eight rounds of those drugs. Once I started the Taxol, it was much better. My hair began to grow back and I had fewer side effects. Usually, five days after an infusion, I'd feel like I had a mild case of the flu, but just that one day. Much easier to handle. I had eight rounds of Taxol. I followed chemo with 38 rounds of radiation.

Not a great time, but they seemed to have worked. So far so good.
 
Dan, that is exactly the combination I had five years ago. The Adriamycin and Cytoxan were the worst. I was out of it for three days following each infusion. Fortunately, the infusions were spread out three weeks apart. They caused my hair loss. I had eight rounds of those drugs. Once I started the Taxol, it was much better. My hair began to grow back and I had fewer side effects. Usually, five days after an infusion, I'd feel like I had a mild case of the flu, but just that one day. Much easier to handle. I had eight rounds of Taxol. I followed chemo with 38 rounds of radiation.

Not a great time, but they seemed to have worked. So far so good.
Wow....I have some catching up to do!! I'm so sorry to hear about Kendall's struggles. I agree....I would want to take that from my dd and let her be fine!! I'll keep you both in my prayers.

Can I ask a question of you much more experienced people? I got my breast cancer diagnosis last Aug, after a routine mammo. In mid-Oct, I had surgery to remove it. All went fine. After a trip to Europe (which I refused to give up), they started radiation....I was lucky, only 16 treatments. My last was on Dec 24. I now am taking Anastrozole. But, here's my issue.....when I was done with treatment and they told me to ring that bell, I was really embarrassed. I gave it one ring and that was it. I just didn't feel that it was that big a deal. I know what others have gone through, and are going through. My mother and grandmother had bc as well, and were fine. So, my question...is it normal to feel like my experience just wasn't all that big a deal? People tell me I'm not dealing with it and that I'm trying to deny it. That I never shed a tear was an awful thing. I'm now healthy, and moving on. Evidently, I should have been weeping and wailing!!!!
 
Wow....I have some catching up to do!! I'm so sorry to hear about Kendall's struggles. I agree....I would want to take that from my dd and let her be fine!! I'll keep you both in my prayers.

Can I ask a question of you much more experienced people? I got my breast cancer diagnosis last Aug, after a routine mammo. In mid-Oct, I had surgery to remove it. All went fine. After a trip to Europe (which I refused to give up), they started radiation....I was lucky, only 16 treatments. My last was on Dec 24. I now am taking Anastrozole. But, here's my issue.....when I was done with treatment and they told me to ring that bell, I was really embarrassed. I gave it one ring and that was it. I just didn't feel that it was that big a deal. I know what others have gone through, and are going through. My mother and grandmother had bc as well, and were fine. So, my question...is it normal to feel like my experience just wasn't all that big a deal? People tell me I'm not dealing with it and that I'm trying to deny it. That I never shed a tear was an awful thing. I'm now healthy, and moving on. Evidently, I should have been weeping and wailing!!!!
I think it's less the norm, but not completely unusual. And I say, good for you if you avoided the difficult emotional part! I know someone who had a similar reaction to yours, and interestingly, she, too, had a mother, grandmother, and other relatives who'd had BC and survived. So she wasn't freaked out about it and just took it in stride. She also had to do chemo, and although it was tough, she had a can-do attitude. So it does happen. But she's the only one I know like that, besides you. As long as you took it seriously and had treatment, then I'm not sure why people are giving you a hard time about it? Anyway, congrats on your survivorship.
 
Wow....I have some catching up to do!! I'm so sorry to hear about Kendall's struggles. I agree....I would want to take that from my dd and let her be fine!! I'll keep you both in my prayers.

Can I ask a question of you much more experienced people? I got my breast cancer diagnosis last Aug, after a routine mammo. In mid-Oct, I had surgery to remove it. All went fine. After a trip to Europe (which I refused to give up), they started radiation....I was lucky, only 16 treatments. My last was on Dec 24. I now am taking Anastrozole. But, here's my issue.....when I was done with treatment and they told me to ring that bell, I was really embarrassed. I gave it one ring and that was it. I just didn't feel that it was that big a deal. I know what others have gone through, and are going through. My mother and grandmother had bc as well, and were fine. So, my question...is it normal to feel like my experience just wasn't all that big a deal? People tell me I'm not dealing with it and that I'm trying to deny it. That I never shed a tear was an awful thing. I'm now healthy, and moving on. Evidently, I should have been weeping and wailing!!!!

Don't try to compare your experience to others. Everyone's experience is different as is how they handle it. This was my second go around with bc. I had it when I was 31 and again at 61.

The first time I had it, it never even crossed my mind that I could die. I was totally focused on losing a breast. The second time, losing my hair was the worst part for me. Obviously, I tend to lean a bit vain. It was an inconvenience and a pain to deal with physically and financially. I don't remember ever crying or getting really upset. It was just something I had to deal with, but I have a good friend who was a basket case with her bc. She had every right to be. The point being, we all handle out trials differently. Don't let others tell you how you should feel.
 
I think life stage can factor in, too. My kids were only 5 yrs old when I was diagnosed. I wasn't worried so much about myself dying - I am not really afraid to die. I was terrified, though, that my kids were going to lose me and grow up without a mother. That was the thing that was most devastating. It also probably makes a difference, too, when you hear it's not invasive or your cure rate is near 100% with just (and I don't mean to downplay that) surgery and radiation, and you don't need chemo. (I used to think I would've given anything to get that news!) Mine was the most aggressive, invasive type and had already invaded my lymphatics, in just eleven months from my previous mammogram when I found a lump. That worried me. And hearing you have to get max chemo and you can't go on tamoxifen (triple negative) - or for those who are Her2+ and have to be on adjuvants for a year - can make it seem more worrisome, especially when you work in medicine and know what all of it means! So it's true, every case is unique and everyone's response to it is different.
 
I’m really not sure of tha names of the chemo drugs, just remembered the initials. I’ll have to ask her. I do know she has to have radiation treatments after the chemo. That is wonderful your wife is cancer free for 21 years! I’m praying my daughter never gets it again after her treatments are over.
I'm praying with you, MIGrandma. :hug:'s
Yes, that's it
Thanks, Linda.
Dan, that is exactly the combination I had five years ago. The Adriamycin and Cytoxan were the worst. I was out of it for three days following each infusion. Fortunately, the infusions were spread out three weeks apart. They caused my hair loss. I had eight rounds of those drugs. Once I started the Taxol, it was much better. My hair began to grow back and I had fewer side effects. Usually, five days after an infusion, I'd feel like I had a mild case of the flu, but just that one day. Much easier to handle. I had eight rounds of Taxol. I followed chemo with 38 rounds of radiation.

Not a great time, but they seemed to have worked. So far so good.
Really, same ones? What a coincidence, Peggy. 38 rounds of radiation? Wow!!

I recall that that combination of chemo, along with the radiation followup, was a new trial back then in '98. Now maybe a standard protocol. Marie had all three drugs on the same day each time. One day every two weeks for 4 months, eight treatment days in all. She would get two in the AM, I think the (C and T) and then I would go pick up lunch. Then the Adria in the afternoon. I remember the nurse always getting on her 'hazmat' clothing' with big black rubber gloves to administer the 'red devil'. To this day, Marie will not go to the restaurant where I picked up lunch for us each treatment day.

She did take Zofran ahead of time each morning, about 3 AM, on treatments days. I think that med was really new at the time. She never did get nauseous. But she was exhausted. When I drove her home each time, I had to hurry her into the house (so she would not fall asleep while I was helping her in) and she would go to the sofa and sleep for about 15 hours.

Following the chemo each time, she gave herself neupogen injections for several days for white blood cell counts.

It was a tough course, but successful. Wishing you continued remission, Peggy. And again, wishing Kendall the best. :hug:'s
...Can I ask a question of you much more experienced people? I got my breast cancer diagnosis last Aug, after a routine mammo. In mid-Oct, I had surgery to remove it. All went fine. After a trip to Europe (which I refused to give up), they started radiation....I was lucky, only 16 treatments. My last was on Dec 24. I now am taking Anastrozole. But, here's my issue.....when I was done with treatment and they told me to ring that bell, I was really embarrassed. I gave it one ring and that was it. I just didn't feel that it was that big a deal. I know what others have gone through, and are going through. My mother and grandmother had bc as well, and were fine. So, my question...is it normal to feel like my experience just wasn't all that big a deal? People tell me I'm not dealing with it and that I'm trying to deny it. That I never shed a tear was an awful thing. I'm now healthy, and moving on. Evidently, I should have been weeping and wailing!!!!
Diane, I think I must have missed your encounter last year. Wishing you continued remission and good health in the years ahead. :hug:'s
 
Well, I am beyond frustrated and so sad. I know this is a thread for those experiencing cancer, but I consider you all friends and I really need to vent.

I took Kendall to the neurologist this morning. Over the past month, she had a complete blood workup, another brain MRI, a spinal tap, an EEG and an EMG. We went in, this morning, thinking we'd finally have an answer. Nope! He hasn't a clue what's wrong with her. As far as he is concerned, she has no neurological issues. He has no explanation as to why she has a severe tremor on her right side and can hardly walk. He admits that the majority of her symptoms point to MS, but he won't diagnose it because she does not have the classic lesions and they did not find any evidence of sheath breakdown in her spinal fluid. He also said that he has ruled out Lyme Disease and Wilson's Disease.

It broke my heart when Kendall broke down and begin sobbing in the neurologist's office. I had a really hard time holding it together. For me, this was much worse than when I was diagnosed with cancer. I had an answer and could make informed decisions. She has nothing!

I asked the neurologist where he would suggest we go from here. He suggested we see another rheumatologist. He wrote down fibromyalgia as a diagnosis and said to call him if we ever needed something. Frustrating! She was treated by a rheumatologist for several years for fibro and then told, as her symptoms became severe, that it was neurological.

So, here we are again. No answers. Kendall's symptoms continue to worsen. I will take her to another rheumatologist, but I am also making an appointment at Mayo Clinic in Jacksonville. There are so many auto immune illnesses, but they only seem to test for the obvious ones they see the most. Where is Dr. House when you need him?

Thanks for letting me vent!f
 
Well, I am beyond frustrated and so sad. I know this is a thread for those experiencing cancer, but I consider you all friends and I really need to vent.

I took Kendall to the neurologist this morning. Over the past month, she had a complete blood workup, another brain MRI, a spinal tap, an EEG and an EMG. We went in, this morning, thinking we'd finally have an answer. Nope! He hasn't a clue what's wrong with her. As far as he is concerned, she has no neurological issues. He has no explanation as to why she has a severe tremor on her right side and can hardly walk. He admits that the majority of her symptoms point to MS, but he won't diagnose it because she does not have the classic lesions and they did not find any evidence of sheath breakdown in her spinal fluid. He also said that he has ruled out Lyme Disease and Wilson's Disease.

It broke my heart when Kendall broke down and begin sobbing in the neurologist's office. I had a really hard time holding it together. For me, this was much worse than when I was diagnosed with cancer. I had an answer and could make informed decisions. She has nothing!

I asked the neurologist where he would suggest we go from here. He suggested we see another rheumatologist. He wrote down fibromyalgia as a diagnosis and said to call him if we ever needed something. Frustrating! She was treated by a rheumatologist for several years for fibro and then told, as her symptoms became severe, that it was neurological.

So, here we are again. No answers. Kendall's symptoms continue to worsen. I will take her to another rheumatologist, but I am also making an appointment at Mayo Clinic in Jacksonville. There are so many auto immune illnesses, but they only seem to test for the obvious ones they see the most. Where is Dr. House when you need him?

Thanks for letting me vent!f
I'm sorry. This sounds heartbreaking. I think going to Mayo is a good next step. Sometimes it takes searching around to find that one person who can help. Keeping you both in my prayers. Keep us updated!
 
Well, I am beyond frustrated and so sad. I know this is a thread for those experiencing cancer, but I consider you all friends and I really need to vent.

I took Kendall to the neurologist this morning. Over the past month, she had a complete blood workup, another brain MRI, a spinal tap, an EEG and an EMG. We went in, this morning, thinking we'd finally have an answer. Nope! He hasn't a clue what's wrong with her. As far as he is concerned, she has no neurological issues. He has no explanation as to why she has a severe tremor on her right side and can hardly walk. He admits that the majority of her symptoms point to MS, but he won't diagnose it because she does not have the classic lesions and they did not find any evidence of sheath breakdown in her spinal fluid. He also said that he has ruled out Lyme Disease and Wilson's Disease.

It broke my heart when Kendall broke down and begin sobbing in the neurologist's office. I had a really hard time holding it together. For me, this was much worse than when I was diagnosed with cancer. I had an answer and could make informed decisions. She has nothing!

I asked the neurologist where he would suggest we go from here. He suggested we see another rheumatologist. He wrote down fibromyalgia as a diagnosis and said to call him if we ever needed something. Frustrating! She was treated by a rheumatologist for several years for fibro and then told, as her symptoms became severe, that it was neurological.

So, here we are again. No answers. Kendall's symptoms continue to worsen. I will take her to another rheumatologist, but I am also making an appointment at Mayo Clinic in Jacksonville. There are so many auto immune illnesses, but they only seem to test for the obvious ones they see the most. Where is Dr. House when you need him?

Thanks for letting me vent!f

Oh my goodness...VENT AWAY! I cannot imagine what you and especially Kendall are going through. I sure hope Mayo Clinic has an answer for you, but I'm sure you both won't stop until you do have one. My heart breaks for both of you.
 

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