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agness · 08-14-2015, 02:57 PM

I had a small egg-sized tumor that developed after successful systemic therapy last year, also stage 3B. My life was endangered and my tumor was at the back of my brain on the cerebellum so I had emergency surgery three weeks ago. Ideals I much better than before as the edema, vomiting and painful chronic headaches were crazy difficult. A craniotomy isn't a walk in the park though and it has been very fatiguing on top of the illness my tumor caused prior to my operation.

I'm due to have SRS in a few weeks.

I read up a lot about HER2 brain Mets and current articles from June this years at with new targeted therapies that all bets are off for us -- that our survival might trump anything seen before.

My oncology wi be doing actice monitoring going forward include g spinal taps to look for circulating tumor cells as well as scans. We won't step up treatment until it is called for as targeted therapies are hard on the nervous system and body. A little like walking on eggshells but for now I have less disease than I have for months, I'm feeling a lot better and so Im focusing on building my body back up to prepare for any eventualities.

I saw a naturopathic oncologist at the start of my diagnosis and his additional blood labs showed deep deficiencies in serum zinc, ferritin (iron stores), magnesium (red blood cell magnesium us more definitive) and D3, plus crazy high levels of copper. In my situation it was extended breastfeeding and being an older mom trying to do too much that seemed behind my disease formation. I recommend getting these levels checked so you can work on trying to correct imbalances. In my case cutting back on copper containing foods (shellfish, coffee, chocolate, avocado) and pushing extra zinc (60mg a day) was able to deplete the copper. Supplementing actively and slowly with magnesium on top of my healthy diet helped to correct that deficiency. I'm still working on boosting my iron levels but I got my period back which was working against me. Improving one's zinc and magnesium levels improves vitamin D absorption and activation plus I'm getting more sunshine.

I hope this is helpful to you. Sorry for your girlfriend's duseae progression but she's not alone and we have options in our arsenal. Do try to take care of yourself too to stay strong for you both.

Best,

Ann

08-14-2015, 02:57 PM	#16
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: Brain Met I had a small egg-sized tumor that developed after successful systemic therapy last year, also stage 3B. My life was endangered and my tumor was at the back of my brain on the cerebellum so I had emergency surgery three weeks ago. Ideals I much better than before as the edema, vomiting and painful chronic headaches were crazy difficult. A craniotomy isn't a walk in the park though and it has been very fatiguing on top of the illness my tumor caused prior to my operation. I'm due to have SRS in a few weeks. I read up a lot about HER2 brain Mets and current articles from June this years at with new targeted therapies that all bets are off for us -- that our survival might trump anything seen before. My oncology wi be doing actice monitoring going forward include g spinal taps to look for circulating tumor cells as well as scans. We won't step up treatment until it is called for as targeted therapies are hard on the nervous system and body. A little like walking on eggshells but for now I have less disease than I have for months, I'm feeling a lot better and so Im focusing on building my body back up to prepare for any eventualities. I saw a naturopathic oncologist at the start of my diagnosis and his additional blood labs showed deep deficiencies in serum zinc, ferritin (iron stores), magnesium (red blood cell magnesium us more definitive) and D3, plus crazy high levels of copper. In my situation it was extended breastfeeding and being an older mom trying to do too much that seemed behind my disease formation. I recommend getting these levels checked so you can work on trying to correct imbalances. In my case cutting back on copper containing foods (shellfish, coffee, chocolate, avocado) and pushing extra zinc (60mg a day) was able to deplete the copper. Supplementing actively and slowly with magnesium on top of my healthy diet helped to correct that deficiency. I'm still working on boosting my iron levels but I got my period back which was working against me. Improving one's zinc and magnesium levels improves vitamin D absorption and activation plus I'm getting more sunshine. I hope this is helpful to you. Sorry for your girlfriend's duseae progression but she's not alone and we have options in our arsenal. Do try to take care of yourself too to stay strong for you both. Best, Ann __________________ Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall. Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy. 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED. 10/27/15 atypical uptake in right cerebellum - inflammation? 12/1/15 Leptomeningeal dx. Starting IT Herceptin. 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly 3/2016 - stable scan 5/2016 stable scan 7/2016 pseudoprogression? 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT 11/2016 Cyberknife to temporal lobe, HBOT just prior 12/2016 - lesions starting to show shrinkage 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone. Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing. Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.