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Old 09-29-2015, 08:06 AM   #41
Freakzilla
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Join Date: Mar 2014
Posts: 55
Re: Ugh Brain Mets!

I think we're going to look at the Marsden as well. One of the best in the world.
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Old 11-25-2015, 04:18 PM   #42
BevinSomerset
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Join Date: Sep 2014
Location: English and living in Somerset, England.
Posts: 10
Question Re: Ugh Brain Mets!

Hi All with experience of Gamma Knife.

My initial excellent response to Gamma Knife was shrinkage of the tumour that was around my thalamus from 2.8cm to 1.4cm but a few months later last two MRI scans have shown a marked change in shape and size so have just had Magnetic Resonance Spectroscopy in Bristol, UK. This is supposed to identify Active Cancer versus Necrosis so the experts can try and think of what to do next. I have now asked to be referred to Royal Marsden, London which may have other experts who can suggest something. I have recently returned from visiting Jacksonville, Florida where my lucky English daughter is working and she suggested I give the Mayo Clinic a call - do I dare go down that route that will be financially crippling.
Symptoms - double vision and strange sensory issues on right hand side of body (temperature and touch)have been the same since August so was really disappointed to discover the suspicious area has grown. Anyone have any suggestions - Hot Tub is great but I cannot live in a hot tub!
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Old 11-25-2015, 05:06 PM   #43
JessicaV
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Posts: 204
Re: Ugh Brain Mets!

Hi, I have not had Gamma knife but have read with interest and empathy the stories of those who have. I read that there is often a concern after several months, but this often turns out to be the processes a tumor goes through as it is dying, which I seem to remember can include swelling with some symptoms, so not actually a problem at all. I suggest you look into this, and read up the stories other women who have had Gamma Knife treatment on this forum, and maybe contact them direct.
This must be both terrifying and very lonely for you, and my heart goes out to you, but I also have a feeling maybe it is not the bad they seem to be telling you it is. I wish you all the best
Jessica
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 11-26-2015, 09:57 AM   #44
BevinSomerset
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Location: English and living in Somerset, England.
Posts: 10
Smile Re: Ugh Brain Mets!

Hi Jessica

How thoughtful of you to post a message. I have an appt on Tuesday to get results of Magnetic Resonance Spectroscopy - terrified as they never usually telephone to invite for an appt and yet the Neuro Oncologist secretary called me on my mobile so figure they are keen to communicate the results. But it is better to know than not know - I shall keep saying that all weekend.
Happy Thanksgiving to all the amazing people who post on this forum - Thinking of you all on this special day.
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Old 11-26-2015, 11:29 AM   #45
fireyfresia
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Posts: 4
Re: Ugh Brain Mets!

Hi BevinSomerset,

I am so sorry for your ongoing neuro-difficulties and the ambiguity of what's occurring and which tx would be best must be terrifyingly frustrating. From skimming your posts on this thread, I wanted to first comment that it seems you're getting a very high level of care and are doing a great job of advocating for yourself - gotta give yourself tons of credit for that!

I had gamma knife to two brain mets in Sept 2015 at Mayo Clinic in Rochester, MN and have received a lot of care there over the years so thought I'd make myself available to you.

(women's health note: Mayo Rochester has the MOST phenomenal women's health department. ASK to be referred - unfortunately, it's still a best-kept secret. They are incredibly helpful with treatment-related side-effects and changes particular to women. I didn't realize how much better things could be. HUGE positive impact on QOL! Please pass along to folks being seen there.)

I'm very new to the brain mets world and so am not sure how much help I can offer, but happy to try - I'm always grateful to the folks who post - I learn so much and find it really helps alleviate stress.

Since dx (stage IV from the start 1/2014) I have sought out opinions at various institutions and have also wrangled with impossible question of the best time to break open the piggy bank/incur enormous debt. I hope you can use what I know about Mayo to help inform you decisions.

While I am thrilled with the care I receive at Mayo, my comment would be that as an institution, it tends to be fairly conservative and married to 'standard-of-care.' If you have access to a reputable institution in which you have confidence and still have solid standard-of-care options available to you, it may be worthwhile to exhaust those with less expense. That said, it's never too early to start the process of getting seen at Mayo. You can always postpone appointments once you've gotten on the schedule, and I've heard it can sometimes take ages to get 'in-the-door.'

If you're looking for something more like 'out-of-the-box'-type thinking, I'd focus more on finding a study and/or using the online trial listings to find a particular doctor/accredited institution doing something interesting. I have no idea about the differences in available treatments between the UK & US. Perhaps there's something offered as standard-of-care in the US that's not available in the UK? I would tend to think not, but I learn new things every day.

Like all places, your experience can depend on who you see. If possible, try to research who specializes in the direction you think you'd like to go - or try to get a recommendation for a medical oncologist who may be a good fit.

Regarding costs: fwiw, I've found Mayo to be fairly priced (for the US), their cost estimates for services accurate, and at times, the final costs were lower than estimated. This is not the case everywhere in the US. I've been there both covered by insurance and when paying out-of-pocket. Also, 'fairly priced' for the US may be dramatically different from the UK.

This is waaaay more than you asked for, but I figured maybe others could benefit. Please let me know if I can further help. Sounds like you're working hard to encourage things to move in a good direction & with all that's going on, that's incredibly impressive. Hoping for the best!

Mayo pros/cons - my experience is limited to the Rochester, MN campus:

Pros
- Mayo is the most patient-friendly major institution I've found in the US (and I've been to many). While everything isn't always perfect, there are things they do really well: I am consistently treated with courtesy and respect; appointments usually run on-time; they are responsive to my questions and needs; they seem to really try to be accommodating. Nicest employees, as a whole, from the top on down to the janitorial staff. Comfortable facilities
- Technically they are at the top of the game in the US. I have confidence that scans/tests/procedures are done and interpreted as well as possible. Top-of-the-line equipment, specialties, specialists, staff, training, facilities, safety protocols, etc.
- The doctors spend time with you. I have never felt rushed or left with a question unasked. I usually feel 'heard'
- Tumor board - multi-disciplinary round-table discussion of unique cases. When there's been a difference of opinion among departments, my case has been presented and I've always been pretty happy with the outcomes
- Collaborative - I've never had a doc who wasn't willing to graciously defer to and/or work with another specialty. I haven't found that to be the case everywhere
- Accurate estimates (actual costs are almost always less) and transparent costs
- Rochester, MN is actually pretty nice and very easy to navigate as a visiting patient


Cons:
- They tend to be extremely conservative and usually only entertain "evidence-based" treatment options
- Lacking in 'cutting-edge' and integrative care (although they do now offer acupuncture and have an integrative department, but I think you have to request to be referred)
- The integrative department seems to still be in its infancy
- The food and dining options are pretty disappointing. We bring sack lunch, etc. (there's a nice co-op grocery nearby & on-campus, I like the tiny cafe in Dan Abraham bldg - soups, salad bar, etc.)
- I've heard it can be difficult to become a patient
- Rochester, MN is not the easiest place to get to
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Old 01-08-2016, 06:33 PM   #46
DizzyDo
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Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Hi All -

Sorry it's been a while since I posted...I decided to make some changes in my life. I quit my job in Washington and took a new one in North Dakota! This is closer to family and friends and I love the area and my new job. Hubby is from NoDak and he loves it! My youngest started college this year so we are now empty nesters.

Unfortunately, I still am having issues with Brain mets. The first three are completely gone, however I developed 2 new ones. The first was zapped in Oct and the second was a spot the doc was watching and it grew so it was zapped yesterday. Because of my history, I get MRIs quarterly so all was found early. Right now nothing being seen that hasn't been treated so hoping for the best. Rest of body still clean, can see bone scars but nothing active.

It makes me sad to see Agness and now Annettechen also with the brain beast! I agree with the comments on better screening. It took a horrible seizure for me to find the first mets, that was unnecessary to let it get to that point.

Hugs and love to all
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 01-10-2016, 10:50 AM   #47
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: Ugh Brain Mets!

Hi DizzyDo, glad you are doing well overall, hope this latest brain met stays zapped!!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 12-04-2016, 07:32 AM   #48
DizzyDo
Senior Member
 
Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Hello everyone!

It's been ages since I posted, but just an update. I had another SRS round in May of this year to bring it to a total of 4 treatment cycles for 6 mets. The radiation onc was wonderful and I didn't need to take the evil steriods which were the worst part of me in the previous treatments. I still am in North Dakota. Since my last treatment, I have had 2 clean MRIs! Below the neck is still NED. Is the beast gone? Who knows, but I do have days now where I don't think of cancer. That is a great blessing that I am grateful for.

Like all of you, this wasn't the life I was planning, but thanks to the research and development of the HER2 drugs, I'm still here.

Best to all of you and thank you for all the support, you made this journey easier and less lonely.
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 12-04-2016, 09:47 AM   #49
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Ugh Brain Mets!

Fantastic news! Thanks so much for posting!! YAY!!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 12-05-2016, 04:06 AM   #50
BevinSomerset
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Join Date: Sep 2014
Location: English and living in Somerset, England.
Posts: 10
Re: Ugh Brain Mets!

Hi DizzyDo
thank you for posting an update and good to hear that the Gamma Knife is working for you. i love to hear your news and amazed that you find jobs so that is impressive. congratulations to you. i have also moved so no longer so far from family and friends. now live in Bedfordshire and also therefore moved hospitals so now at University College Hospital London - more advanced. The double vision has reduced and having that checked on Wednesday to see if there is a reason for that - good i hope. next brain MRI and ct is THURSDAY, NEXT WEEK. I hate those scans!
Hope you all had a Thanksgiving that you wished for.
Beverley
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