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

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.

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

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

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

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

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:)

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Another uplifting interesting case with a positive outcome.
Ev
http://www.oncologypractice.com//fil...randt_Case.pdf

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

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

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Prayers headed your way Darita

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

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Wish you luck with this new treatment.
Mario

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.

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

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

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

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?

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.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Ev,
It's all so difficult, too difficult. Wonder if Genentech could be of any assistance, maybe make either drug available for compassionate use. Anything to help turn the tide.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

I have been traveling and doing appointments and home for a short time. Meanwhile other family members have been busy researching for answers.
It seems that methotrexate given parenterally through her vein port and the depocyt through her ommaya could possible bring good results. They seem a good combo for irradiating tumors in the spine. It claims methotrexate clears the spine better given intraveneously than intrathecally to remove the growths when given in combination with the depocyt.

So maybe we try that next. Will run it by the doctor.


This is the info on mtx


Numerous reports suggest that systemic therapy improves survival for patients with LM.72,93- 100Some authors feel systemic therapy is the most important part of the treatment of LM73- 74and exclude intrathecal therapy in patients with responsive cancers.94- 95,97,101Agents capable of producing adequate CSF concentrations following systemic administration may benefit patients with LM.


Methotrexate.Methotrexate inhibits dihydrofolate reductase and the synthesis of purine nucleotides and thymidylate, interfering with DNA synthesis and repair. At high doses, methotrexate has favorable CSF penetration. A prospective, nonrandomized study comparing intrathecal methotrexate (n = 15) vs high-dose systemic methotrexate (n = 16) in patients with LM produced provocative results. High-dose methotrexate (8 g/m2over 4 hours) resulted in a mean peak concentration of 17.1 μmol/L in the CSF; cytotoxic CSF methotrexate levels remained measurable much longer than with intrathecal dosing. Furthermore, there was higher CSF tumor cell clearance and survival was longer (13.8 months vs 2.3 months, P = .003) in the systemic methotrexate-treated cohort.102Because of the favorable pharmacokinetics of high-dose methotrexate, further studies in patients with LM are warranted, possibly in combination with other agents.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Lani has posted a new abstract on the procedure: http://her2support.org/vbulletin/sho...t=methotrexate

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Ev,
No new advice...just wanted you to know that I'm thinking of you and Susan...and praying for strength, continued love, and a quick reversal of all those symptoms!

Just for the record...I pray for a CURE everyday...and Susan's name is in the litany...believe me!

With love,
Denise

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Im really flipping out. The doctors more or less yesterday said that my wife is about to die. They more or less said they are throwing the kitchen at the cancer. Her brain is building up fluid and were gonna hopefully have a solution for that today so that we can start intrathecal herceptin. along with that they want to give pretuzamed which is a large molecule. They think the brain barrier could be down because of the disease. They also said that the cancer is resilient to radiation and has now becoming resilient to chemo's The first thing we need to do is take care of the fluid backing up so that she can get intrathecal. The second question is im looking for a list of small molecule chemo's I can find one I always end up with the biologics. Im flipping my lid and cant imagine what life is without my wife and how my 3 little girls are gonna handle this.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

I am so sorry to read your post. I am going to pray for your wife and your three little girls. I am so sorry you and your family are going through this. I pray that they are able to drain the fluid and give her the IT Herceptin.

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

Peter, IT herceptin will work, but you need steroids to clear the fluid immediately. My wife was in a similar situation last year in April, but now she is nearly clear.
Hope you succeed. Praying for you
Mario

Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
 

One can only imagine that organizations like NCI or NIH would provide critical information such as contents provided in prior post to oncologists which are, by their own admission, at road's end. Before throwing in the towel, any KNOWN procedure, even ones that only have remotest chance of working, MUST be attempted. All man-made laws and legalities become pretty insignificant when facing death.