HER2 Support Group Forums - Caroline has passed on

I appreciate your comments, Nora. Glad you have a blog, or SCREAM button, to vent. We all need one. I was moved by your search for answers, as I have done the same with each loved one from this site over too many years. I played detective to try to figure out what I could, to better understand.

Caroline and I have been together on this site for many years. She posted when I posted, though she read more than shared. I think she didn't like to complain and had such complex issues it was difficult to enumerate. We emailed for years as that seemed a good place to send long lists of what was happening. I did my best to help.

Then Karen said Caroline wanted to talk to me. I suppose she'd emailed me her phone # at times, but I am the worst phone buddy ever. Karen got me to move and for that I will always be grateful. Caroline and I had hour long talks often over the last many months. I loved hearing her voice and really got to know her and her family and her medical woes.

In 2014 she developed shingles. That's a signal your immune system is down. I had shingles after one month on Taxotere (when I recurred throughout my liver). My supplements hadn't built up enough to hold it at bay. And when you have shingles you not only have horrific debilitating pain but you cannot receive chemo, which you know you really need to kill off the cancer. Sigh.

When Caroline's doc gave her an injection for the pain management, she punctured her lung and that's when everything went to hell for Caroline. She began losing a lot of weight and it was alarming. She realized in retrospect that she had become severely dehydrated because she could not eat or drink. Her stomach was always upset. She realized she had an adrenyl problem a very sensitive system that reacted to the CT contrast and meds she was being given for various reasons. Her onc was on sabbatical (maternity leave) and her access to care was not good. That really upset me.

She had to cut out most foods. She couldn't process protein very well, nor dairy, nor soy. Her whole digestive system was affected and she was genuinely working to regain the weight. She was down to 87 lbs. Finally a doc began giving her digestive enzymes which seemed to help the belly pain at any rate. At first, tThe onc had thought her pancreas was involved and bounced her back to her gp who knew nothing about digestive enzymes. They wanted to insert a feeding tube. After carefully questioning the doc and nurse she discovered that it would involve receiving something that had dairy and soy in it. A nightmare as you can see. She was very proactive and refused the feeding tube. Worked with a dietician to create a plan.

Her upper stomach was burning so she did a castor oil pack for 20 min which seemed to help. She'd lost 30 lbs since the puncture. She saw a different onc in town that ordered a test and the pancreas was fine. She wished someone had done that 3 agonizing mnths sooner. She joked -- oh well, it's only my quality of life. Such a sweet tenacious lady!

She became so weak, she was so stressed by all the invasive procedures docs were suggesting, she stopped, trying to focus to getting better. She hoped she was making the right decision.

She mentioned that after she began taking B12 she noticed she could finally lay down in bed to sleep. For 6 mnths she would play musical beds trying to find something comfortable. I recall that with the pain of shingles. No place gave me relief. I guess that's what she was experiencing. Horrid.

The contrast dye threw her body so off it affected her heart function. Her ejection fraction was too low they said for her to have treatment. The EF was right after her MUGA which is invasive and she believes caused the issue. Shortly after she went for an ECHO and her EF was up to 65%. So she was able to get a reloading dose and she felt great. Her TMs had dropped. She started noticing the TMs rising and a pulling feeling on her left side.

She stopped drinking the contract by January, but still had the IV contrast. I must say I do not drink but 2 teaspoons of the contrast for many yrs. They told me I had to drink it or the scan wouldn't work. I kept cutting back and getting readings. I was finally down to 2 teaspoons. Poured the rest down the drain.

Caroline said the IV contrast caused dull headaches and pain down her right arm. Again she had an MUGA and a lowered EF and was denied treatment. Next time she asked for an ECHO instead and her EF was back up. She tried to tell her onc what she thought was happening, she told me, but he wouldn't listen. THAT INFURIATES ME.

After that the onc that was on sabbatical returned and told her THEY DON'T DELAY HERCEPTIN TREATMENTS BASED ON FLUCTUATING ECHOCARDIOGRAMS UNLESS THEY GO BELOW NORMAL -- and hers did not!!! AGAIN, THIS INFURIATED ME.

She was delayed twice in 4 mnths and she's sure the shingles started bewing after the first delay and blew up after the second delay.

Far more than a comedy of errors as you can see. After March 31 the MRI showed the adrenal "whatever" she called it, had stopped growing and was stable in the kidney. She believes this is because she stopping drinking the dye!!

At that point they were telling her that the calcification was scar tissue, not cancer. The chest CT in April of 2014 showed stable in the sternum where the cancer started.

In 2013 she was walking some 5k and 10k walks, eating better -- eating! and feeling not so bad. She had a bad reaction to a bone-building IV therapy called Pamidronate and discovered she was also feeling on a med she was on for 7 yrs and was only supposed to take for a short period of time. She finally figured things out on her own. It surely does not sound like she was getting proper care. She discontinued things she realized were causes her problems.

She thinks the Tamoxifen caused her to recur, which is what one of my docs told me when I recurred. I told me to flush the Tamoxifen down the toilet! That it could have caused the recurrance! She remembered my writing that. She discovered that she has a major problem metabolizing things and detoxifying.

She wrote me that she is from a small but beautiful area and there were many wellness people that have helped her. She knows a woman in her neighborhood who takes Immunocal ??? and a lot of supplements. And she is 7 yrs out and doing well. Caroline was informing herself, reading the information on the HER2 site and the internet.

So Caroline's story is obviously and long and complicated one. If it helps anyone get a little more insight or perspective, that is why I have spent the time to write all this to you, my Sisters, to share.

And, if you don't know me cause you're new and I've been a sabbatical for the last year -- NO, I AM NOT PREGNANT, LOL, not at age 71...!!! -- please read some of my threads. Andrea Barnett Budin. And most especially, please read my threads on WHY I TAKE SUPPLEMENTS.

Off of Herceptin since '08. Alive and well. Some annoying mysterious things they needed to check out in the last few yrs, but all were/are BENIGN!!! Much stress and worry till the results are in, till the surgeries were scheduled and actually took place, but all good! I call myself a 20 yr survivor, having been dx at age 50 in 1995. That was before I or anyone had benefit of Herceptin, as it was in clinical trials. Luckily for me when I recurred throughout my liver in Aug of '98, in Sept of '98 the FDA fast-tracked Herceptin out of clinical trials and made it available to all metastatic bcers. Yrs later -- it was/is available to first liners!!!!!!!!!!!!

Love and Light...

As always, sorry so long, but I thought you should all know what I know. Informed is armed!

Andi