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Old 01-28-2013, 01:15 PM   #41
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Well a hitch in the procedings and the ommaya surgery canceled for now. Her EKG showed some T wave abnormality. She has to make an appointment with her cardiologist and get cleared for surgery before they will do the reservoir.
I know anemia and central nervous disease can cause T wave changes. She is anemic because of the chemotherapy.
Anyone else run into this situation?
She is not having chest pain or any other symptoms. We just found this out today and the surgery was scheduled for Wednesday.
Thanks for any input.

Ev
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Old 01-28-2013, 03:50 PM   #42
MonicaB
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

T wave changes are not specific for ischemia. They probably want to be sure her cardiac function is within normal limits. You are right if Susan has anemia ans was tachycardia at the time, that could do it.
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Old 01-28-2013, 08:48 PM   #43
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

thanks Monica,
Susan has a cardiologist so will have him review everything carefully to be on the safe side. I have not seen the EkG so have no idea what type of abnormality they are talking about. They found the problem during the pre-op series of testing Friday and then compared it to an earlier EKG from her oncologist's office.
We want to be safe above all. Maybe her cardiologist will be able to see a safe path through this so she can still get the reservoir put in.
In the meantime she goes on with the lumbar intrathecal treatments.
Always something!
Ev
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Old 01-30-2013, 11:19 AM   #44
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Update:
Susan did not receive 80 mg today but remains on 60 mg. The doctor said he did not want to change the dose prior to the surgery. This was the fourth dose on 60. The spinal fluid tested clear last week.
Next - the visit to the cardiologist. Hope his evaluation will allow rescheduling the surgery soon so to allow better perfusion of the medication.
Ev
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Old 01-30-2013, 01:57 PM   #45
MonicaB
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Good news that she received it and that the spinal fluid is crear!! . She is in my thoughts and prayers to get the Omaya and up on the dose. Than is for keeping us posted
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Old 02-06-2013, 12:58 PM   #46
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Susan had a few uncomfortable days after her last treatments - some vomiting.

She had the IV treatment of herceptin and perjeta and then the next day the intrathecal treatment of herceptin and toptecan. She needs to separate the treatments in the future and NOT do them back to back.

The cardiologist cleared her completely by EKG and ultrasound. Said she had a healthy heart. That is very good news all around as she can now have the ommaya replaced and it also indicates the Herceptin in the larger doses is not harming her heart.

Her doctor gave her the 80 mg today. That is the dose recommended according to the 1.5 mg per kg of body weight. She sees the neurosurgeon again tomorrow to begin again the process of setting up the ommaya surgery replacement. The cardiologist expressed shock that they canceled the former surgery scheduled since he found no problems.

I am relieved. Her next MRI is next Tuesday.

Ev
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Old 02-06-2013, 05:11 PM   #47
MonicaB
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

All good news! So happy for Susan and you well deserved with endurance, perseverance and help from friends like the ones joining this forum...my heroes! .brighter days will come
Thank you all!
Keep posting good news
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Old 02-08-2013, 09:53 PM   #48
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Another uplifting interesting case with a positive outcome.
Ev
http://www.oncologypractice.com//fil...randt_Case.pdf
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Old 02-13-2013, 02:36 PM   #49
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

The Ommaya was replaced today using the opposite side this time. The procedure went very well according to the neurosurgeon. She was admitted for observation for two days - I guess the standard routine. She has a headache of course but normal neuro checks.

Now to keep it safe from infection until it heals well.
It is good that this part is over so she can get her treatment using the ommaya instead of the lumbar punctures.

Ev
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Old 02-15-2013, 03:04 PM   #50
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

To Rolepaul:
What is the highest herceptin mg IT being given at the Houston MD Anderson? If our physician does not feel comfortable about going higher we would like another avenue if Susan needs it.

Ev
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Old 02-21-2013, 10:58 PM   #51
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I certainly wish much success to all who are doing the IT treatment for spine mets, but my daughter is having a very rough time right now.
She finally got up to 80 mg the last treatment before the new ommaya was placed, but the subsequent MRI showed progression all along the spine. Several spots in the cerebellum, a more prominent area in the thorax and more also in the lumbar region. He changed her treatment to a more toxic chemo Lysomomal Tycaribine (sp). He is concerned that it is getting out of control. He wanted to discontinue the herceptin as it cannot be mixed wth the new medication. I did not agree with stopping the Herceptin so she will get it on alternate weeks. Because this is a more toxic medication, she receives steroids before and after the treatment.
She gets the stitches out of her ommaya site Monday. Tuesday she will be admitted to the hospital for the flouroscopy and the areas in her spine that are grossly enlarged will be radiated. She will also receive her herceptin that day.
I am told she will have to stay overnight for observation. We were so hopeful for the Herceptin but maybe the lumbar punctures were not getting it all into the right area as some were very painful. It is good they can use the ommaya now though.

Ev
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Old 02-22-2013, 10:36 PM   #52
dchips1
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Prayers headed your way Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 02-23-2013, 06:28 AM   #53
JennyB
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

EV,
I hope the new regime starts to show improvement for your daughter, sending prayers from down under.
Jenny
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Praying the Herceptin is as good as its hype!!
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Old 02-24-2013, 05:08 AM   #54
marvass
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Wish you luck with this new treatment.
Mario
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Old 02-25-2013, 03:54 AM   #55
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Guess I should change title or start a new thread, but this is all very connected. The new medicine replacing the topotecan -lysomal tykarabine- was put through the ommaya last Wed. She was prepped with medications -including decradon and then given steroids for two days following.
She did fine for a couple days and then started continual vomiting so is in the hospital trying to get it under control.
The vomiting is not new with her and has happened before the new medication was started. Has been hospitalized for it before.
She was due for radiology to check the spine for obstructions and get them radiated Tuesday, but now is in the hospital a couple days early. I guess more testing will be done to rule out other possible causes.
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Old 03-06-2013, 11:20 PM   #56
dchips1
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

how long does the pain of the Ommaya surgery take to subside? bending over is not a good thing, neither is drinking to fast, coughing, blowing nose or messing with ears. Tommorow will be 8 days. since placement. talk about pain. hope prayers and shout outs for good scans and healing to all Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 03-07-2013, 05:44 AM   #57
NEDenise
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Darita,
Prayers going up for some relief for you! I think of you often, as you blaze this trail. I hope IT Herceptin is exactly what you need to kill this beast once and for all!

Did the doc who placed the reservoir have any advice about pain management or its duration. I don't think any kind of pain is "normal" or okay...until I check it out with someone. Too often, we Mom-types just grit our teeth and muddle through...when we should have said something.

All the best to you! Keep us posted!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 03-09-2013, 10:37 AM   #58
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Update on Susan.

She is receiving the depocyt every two weeks IT now x five doses. and then will go to once a month. So three more of the every two week before the once a month. It seems the slow release depocyt gives the most side effects on the third/fourth day.

When those kick in she has a very bad day or two. At first, even with steroid prep she was endlessly vomitng and she seemed to have the brain inflamation reaction. Had to be hospitalized. Now the doctor has ordered the steroids to be continued past the old schedule to 4mg once a day continually. However this time two days after treatment she had trouble with walking and fell. Also sleeping continually.

Dr. Monica Loghin MD did consent to talk with me about her case. She thought the local neuro-oncologist was doing all that could be done and going to Houston would not help. She is still getting the 80mg of Herceptin IT on oposite weeks from the depocyt. They cannot be mixed.

The Houston doctor said it was not a good sign that the leptomeningeal areas progressed while on Herceptin 60 mg as Herceptin usually keeps it stable even on lower doses.

She had talked with the Orlando Dr and seemed to think Susan's condition and areas were much more advanced that some others that have had success. For that I can try to blame her old oncologist for not picking up on the disease sooner. Susan had to ask for the MRI.

Dr. Loghin continued to say that Herceptin IT research is in such an early stage. She indicated some have success with only 20 mg and some with 40 mg. Susan did not have success with 4 of the 60 mg doses and one 80 mg dose. It could not even keep her stable. I believe, from her statements, Dr. seemed to think that the disease had overridden the herceptin and the topotecan.

So far she is still getting the IV perjeta and Herceptin through her port to help control any total body problems.

Hopefully the depocyt wil get the rapidly spreading cells in the spine under control, as the other treatment set up had stopped working.

Ev
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Old 03-09-2013, 11:17 AM   #59
schoonder
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Treatment with T-DM1 frequently works after Herceptin fails to be efficacious. Could use of this compound be considered to help restore control over the cancer?
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Old 03-09-2013, 11:48 AM   #60
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Hard to know. We were wondering about using perjeta IT. It was very difficult to find a doctor willing to do the higher dose Herceptin.
Your suggestion of TDM1 -or even pergeta - IT, might be something to consider but again unapproved and experimental so what doctor would chance trying it?
And of course the guidelines for TDM1 are such that it would not be available to her at this point.
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