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Topic: HERCEPTIN and/or PERJETA Threads

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Dec 4, 2014 05:13AM

Teakie88 wrote:

I am currently on Herceptin and Perjeta with Zometa every three weeks. Would love to hear from others who have been on this targeted therapy and how well the treatments have been working for you..

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Feb 26, 2019 08:05AM BSandra wrote:

Dear LoriCA, thanks again for your story and advice. I really hope it didn't morph to triple negative, and yes, they ordered a biopsy, asked us to calm down and said it is worth to wait for results. Oncology drugs are covered by the state here, and as I understood, once it is written on paper that you progress, you cannot longer be on them. But Sandra's case, as they said, was not common, and they seemed to be willing not to let HP go. Hope they will find ways to wrap up that candy into needed paper if we face some strange situation (different ER/PR/HER in breast and liver?). Being NED in the rest of your body and then progressing in the breast is a bit crazy... Anyway, they all were very warm and encouraging. Actually I was not expecting that:) I am calmer today after the meeting but I know anxiousness will comeback soon... waiting is always the worst.

Andi, thanks for your support. Bella, it is totally otherwise in our situation than yours - first time we didn't have redness or swelling, now we have it. Ehm... Biopsy will tell it all. I'll keep you all posted. Thank you all from the bottom of my heart,

Saulius


Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Additional strategies: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK since June 2018 Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab)
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Feb 26, 2019 01:50PM LoriCA wrote:

Lucky me had the swelling, redness and obvious skin changes both times!

The waiting is always the hardest part Saulius, once you have a new plan you will both feel better. Local progression isn't considered the same as metastatic progression, which is why we can usually stay on H&P. Glad to hear that you got good feelings from your oncology team.

Andi you raise a good point about the financial aspect of load doses. The dosing guidelines from the manufacturer say if the infusion is missed by more than one week a load dose is required (for both weekly and every 3-weeks), but I have gone more than two months between infusions and my MO thankfully didn't require me to have a load dose. I guess some MOs strictly follow the guidelines and others believe it isn't required.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 26, 2019 04:24PM jackboo09 wrote:

Hi Andi,

Great to hear from you. I remember chiming I’m on the loading dose debate. Back in Jan I had a 7 week break and my onco was happy for me to have a normal dose. Interestingly, he said he would inform the pharmacy as they automatically make up the higher dose if they see you have had a break over a set number of weeks. I was really surprised to hear this.

Mommy Erin- how are you feeling now? The SEs appear to be very random on HP and can hit us sometimes and then not at all. I find it very unsettling when this happens. My anxiety was higher after the extended Christmas break and yet all was well. I do hope the tx continues without a problem Mommy Erin.

Salius- sorry to hear of your wife’s progression. Lori’s post seemed full of good advice and hopefully you will find a way. Let us know the outcome of the MDT.

Lori, hope you are doing ok and sending my best wishes to al on this thread. I scan in early March. Anxiety building....

Liz

Stage 2b Her 2 + Est + one pos node Age 40 Dx 3/15/2017, IDC, 2cm, Stage IV, metastasized to other, Grade 3, ER+, HER2+
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Mar 7, 2019 09:47PM Southernsurvivor wrote:

Hi everyone - I’ve been on Navelbine and Herceptin for the past 6 months but now have had some progression. My MO is wanting me to move to low dose Taxotere (2 weeks on, 1 week off) with H&P every 3 weeks. Has anyone on this protocol now or done this protocol previously? I would love to hear some personal experience.

Thanks in advance, Southern

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Mar 9, 2019 07:04AM BSandra wrote:

Dear all, we're after MDT yesterday: the punch-biopsy showed no change in cancer type in the recurrent breast (ER- (0%), PR- (0%), HER2+ (100%)) and they decided that best option is to keep HP treatment re-adding docetaxel (Taxotere). We were a bit surprised (maybe hoped for surgery or radiation) but were explained that last time response to THP was "fantastic", and they said they hope this time it should work well too. Hope so. It is bitter-sweet, of course, as we have a plan and we are calmer but docetaxel for the second time after 12 cycles finished just 10 months ago will be very difficult. My heart cries for my wife, I was holding her yesterday as she cried. I personally asked our doctor about surgery later if treatment is successful but she said that "option would be not standard but we can always discuss things". So... We will start chemo on Tuesday. With this I wanted to ask you which, from your experience, supplements should be not taken while on docetaxel, as they might make metabolism faster, diminish docetaxel performance and so on (we started taking them after completion of of docetaxel last time): NAC, ALA, Cordyceps, Zinc, Reishi-Shiitake-Maitake complex, fish oil with vitamin D? The problem is we are afraid to go off anything, if not in need, as her liver is completely NED on past 4 MRIs and we don't really know what is holding it in such a good condition (for sure HP but something else might also be a contributing factor). Any advice would be very appreciated...

Dear Jackboo, LoriCA, Bella, and others, thank you for your support and advice, they really keep us believing and going forward. Thank you so much...

Dear Southernsurvivor: I never heard of such protocol but it does seem quite logical as docetaxel is standard in Cleopatra protocol but maybe too harsh to be continually on? There is weekly low dose paclitaxel protocol her but I didn't hear of 2wks-on-1wk-off for docetaxel...

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Additional strategies: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK since June 2018 Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab)
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Mar 9, 2019 02:16PM LoriCA wrote:

Saulius so much of your wife's path mirrors mine, although I did paclitaxel (another taxane) both times. I was resistant the second time around and I truly hope she has better luck than I did. IBC is sneaky and stubborn and frustrating. My MO didn't want me on any supplements other than the Vitamin D I was already taking, and he okayed trying potassium and magnesium to see if it would relieve the muscle spasms I've been having (it didn't), but I think that was only his personal feeling, not that they would specifically interfere with the chemo. He does support integrative treatments but laughs at the idea of supplements having any effect on cancer.

My radiation oncologist wanted me to wait until I was chemo-resistant before resorting to radiation since you can only do it once. It makes sense that they would want to try chemo again first, but if the IBC continues to spread while she is on Taxotere, you might want to push for radiation again. Mine was spreading too fast to waste time trying a different chemo (in fact my radiation plan changed twice in the first week to include a larger area due to the spread). They typically use a higher dose of radiation for IBC than for standard breast cancer, 50 gray is common for non-IBC but with IBC they often will use 60-72 gray and my RO said she is going to push the limit. I started in January and probably won't be finished until April. It appeared to be radiation-resistant too (not uncommon with IBC), but after 3.5 weeks, part of that time using a bolus, it finally started to respond. They just redid my plan again last week because I lost a substantial amount of soft tissue from the rads.

Keep holding her while she cries, that's all we really need sometimes, just to be held. It helps keep us strong. Sending a virtual hug to both of you.


SouthernSurvivor I never heard of two weeks on, one week off either. Maybe because it is low dose? If you haven't done a taxane before, my only advice is to keep an eye on the neuropathy. The risk is worse with taxol than with taxotere, but it's still there. Consider icing your hands and feet during infusions. I have several friends in my support group who need to use a walker or cane because their neuropathy from taxanes is so bad. I'd rather ice my feet than end up having to use a walker.

Hi Liz, great to see you! I'm hanging in there, worn out from daily treatment and sometimes having to visit multiple facilities in one day, but now that things are finally starting to look better I'm determined to stick it out and the depression is starting to lift. Hope your scans go well!

Hope everyone else is doing well!


Lori

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 11, 2019 07:45AM bstein wrote:

I also stayed on H&P during radiation

Dx 6/23/2015, IDC, Right, 1cm, Stage IV, Grade 2, 1/11 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/31/2015 Perjeta (pertuzumab) Targeted Therapy 7/31/2015 Herceptin (trastuzumab) Chemotherapy 7/31/2015 Taxotere (docetaxel) Surgery 2/2/2016 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right)
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Mar 12, 2019 02:32AM BSandra wrote:

Ah Lori, thanks for all the details. I hope very much she responds to docetaxel, doctors hope so too. Last time we quit it after 12 cycles (9 months) not because of resistance but because of side effects. Her's spreads not so fast (maybe HP are working a bit): in 7 weeks area of ~2 cm around areola got red. Let's pray treatment works. Best wishes to all,

Saulius

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Additional strategies: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK since June 2018 Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/26/2017 Taxotere (docetaxel) Targeted Therapy 8/27/2017 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab)
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Mar 13, 2019 06:19PM - edited Mar 13, 2019 06:25PM by Hopefulgirl

Hello Mets sisters,

I am on this blog reading the posts daily and have not really posted too often.

I have a large mediastinum tumour behind my sternum and a few ribs with Mets.

I started THP IN Dec. 2018 and I had my first CT scan last Friday.

I was initially advised by my MO that I would likely need taxol for one year.

The results are Now in from the CT scan and I am overwhelmed.

The tumour has shrunk a bit and everything else is stable!!!

My MO now advises that I will complete four more THP treatments. A total of 6 cycles. Or 12 treatments with taxol

Once that ends I will no longer be on taxol and I will receive just H and P

I have a few questions:

Has this happened to anyone else? That they were Originally slated for more taxol and then taxol treatment reduced after a positive CT?

My immediate response was should I just stay on taxol for more treatments to really shrink that mediastinum tumour? The MO said no because H AND P will continue to shrink the tumour . Have others notice tumours shrinking just on H and P Without taxol?

We are planning a trip to Aruba in Nov 2019. I will be done taxol on April 2019

When I called to apply for travel insurance the stipulation is one can not be on Chemotherapy or radiation 90 days prior to depart date. I know that H an P are monoclonal antibodys but just a bit nervous that. H and p are also considered chemo? Thoughts please

Finally I am so overwhelmed and thrilled with my response to THP ANd more excited to get rid of taxol in April rather than Dec. I would love to hear how long this treatmight might last before progression. Can I hear from others how long you have been on H and P?

Thank you so much time for your time reading this long post and your responses to same.

cathy









Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+ Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Mar 14, 2019 07:28AM bstein wrote:

Hope you will be on h&p forever unless it stops working. Is is the taxol that is working or the H&P? You have no hair now maybe 8 rounds of taxol and then H &P. Look up the Cleopatra trials that what your treatment has been based off

Dx 6/23/2015, IDC, Right, 1cm, Stage IV, Grade 2, 1/11 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/31/2015 Perjeta (pertuzumab) Targeted Therapy 7/31/2015 Herceptin (trastuzumab) Chemotherapy 7/31/2015 Taxotere (docetaxel) Surgery 2/2/2016 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right)
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Mar 14, 2019 03:33PM pdlc436 wrote:

Dear Perjeta/Herceptin w Zometa Girls,

Hope we all go on forever on this treatment. I am also taking Her/Perjeta every three weeks with Zometa every six months. I just had an episode of extremely painful joints—some joints have not fully recovered like hands—and swelling of my hands. I suspended Minocycline which was prescribed for a hot rash on my face, the antibiotic also helps some stomach issues. The pharmacist thinks it could also be the Zometa, which can cause symptoms a few weeks after it is given. My Onc just ordered some inflammation markers tests and is sending me to a rheumatologist. I have some questions: 1. Do any of you have swelling joints? 2. Did you have to stop Minocycline? 3. If so, what did you replace it with?

Wishing you all great health!

Thank you so much in advance for any advice...

P.

Dx 1/13/2009, IDC, 2cm, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Dx 10/2017, IDC, Stage IV, metastasized to bone/lungs, Grade 3, ER+, HER2+
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Mar 14, 2019 07:23PM Hopefulgirl wrote:

hello ladies. So sorry if one of my questions is not clear is how many years are some of the ladies lasting on h and p before progression.

Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+ Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Mar 14, 2019 08:15PM pdlc436 wrote:

Hi Hopeful,

I was on THP from October to April 2018, until my body said NO MORE. My doctor said her goal was always to do as much Taxol as I could take, and it worked. I am on HP and still here, doing well.

Regarding the insurance, if something happened you will have a hard time arguing that H&P are not chemotherapy drugs. Still, I think it's always a good idea to buy traveler insurance.

P.


Dx 1/13/2009, IDC, 2cm, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Dx 10/2017, IDC, Stage IV, metastasized to bone/lungs, Grade 3, ER+, HER2+
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Mar 14, 2019 09:29PM Hopefulgirl wrote:

thank u pdi. Were u ever stable during oct to april2018

Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+ Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Mar 16, 2019 02:17AM jackboo09 wrote:

Hi hopeful,

I did 4 Taxotere with HP when I was dx with a mediastinum tumour in March 2017. I was due to have 6 T, but I was struggling with side effects and I had a good response when I had my first scan in June so my onco advised me to carry on with HP. I got to NED, exact date has slipped my mind,and my scan last week is clear. I have had a good run on this regime.

Liz

Stage 2b Her 2 + Est + one pos node Age 40 Dx 3/15/2017, IDC, 2cm, Stage IV, metastasized to other, Grade 3, ER+, HER2+
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Mar 16, 2019 12:12PM mara51506 wrote:

I am going into my 5th year of BC without progression from neck down. Had Herceptin first and then the Perjeta was added after my brain met presented itself. I am NED from neck down.

The important thing to note is that these drugs do not cross the BBB to the brain. Having a brain met does not mean these drugs don't work. I am rare in that my cancer did not go to the body first. My medical team appreciates having my case to study. I just appreciate still being stable for as long as possible.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/22/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Mar 18, 2019 06:00PM MommyErin wrote:

HopefulGirl- I achieved NEAD with 6 cycles of TCHP and have continued on HP since (19 months). I’m 2 years out from diagnosis and tolerating HP well, still NEAD, so staying the course. One woman I see regularly during my infusions has been on HP for 5 or 6 years (maybe longer, can’t remember exactly), and she just dropped P because it started bothering her stomach, but she’s continuing with H. She’s not NEAD, but she’s stable and has been for a while.

Dx 3/14/2017, Right, Stage IV, metastasized to liver, ER-/PR+, HER2+ Chemotherapy 3/20/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/8/2017 Mastectomy: Left, Right Radiation Therapy 9/28/2017 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Mar 18, 2019 09:56PM Andi67 wrote:

Hi Hopeful - I am in my 6th year of NED with H only. Started with both H and P but side effects from P were quite bad for me, so my oncologist suggested dropping it. I have another scan coming up in April and am hoping that nothing has changed! 

XO

Andi

Dx 4/2009, DCIS, <1cm, Stage IV, Grade 2, 0/3 nodes, mets, ER+/PR-, HER2+ Surgery 5/8/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/13/2012 3DCRT: Breast, Bone Chemotherapy 11/19/2012 AT Hormonal Therapy 3/11/2013 Arimidex (anastrozole) Hormonal Therapy 10/11/2013 Aromasin (exemestane) Hormonal Therapy 3/13/2014 Faslodex (fulvestrant) Hormonal Therapy 5/5/2014 Arimidex (anastrozole) Targeted Therapy Herceptin (trastuzumab)
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Mar 19, 2019 09:01PM Hopefulgirl wrote:

Hi all and thank you for your responses

Liz do you mean that your mediastinum tumour isno longer visible on your scans. If so that tumour contine to shrink to nothing on just H and P? I am so happy for you and wish you many years on this treatment plan.

Mara sending you hugs and positive vibes that your brain Mets stay stable and there is never progression from the neck down.

Erin, so pleased to hear you are also NEAD ... did you arrive at NEAD during taxol portion of treatment or on H and P? so interested if H AND P works on shrinkage after taxol is taken off the treatment plan...very encouraging story of your infusion met sister. Thank u for sharing..

Andi, wow 6 years. congratulations! What were your side effects with P? I have developed a skin issue on face that looks like rosacea and it is awful. Seeing a dermatologist as soon as the referral gets mailed out. Bald and acne. No fun. Another met sister advised that they perjeta is the culprit. Good luck on your April scan.

Cathy


Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+ Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Mar 19, 2019 10:16PM Andi67 wrote:

Hopeful - side effects were neuropathy - which I had already developed in my feet from the Taxol and H/P Chemo combo....but P made it a lot worse. Also, all over achy body - especially joints. No problems with skin. My nails have never been the same - they are terrible - but I can live with that! Moving to Herceptin only helped, although after each Herceptin infusion (I don't always get them every 3 weeks) my neuropathy is a lot worse for a week or two. My oncologist swears that Herceptin doesn't make it worse, but I know from connecting with other women on this board who have been on Herceptin for years and years that it definitely does. Thanks for the support on my April scan! 

XO

Andrea

Dx 4/2009, DCIS, <1cm, Stage IV, Grade 2, 0/3 nodes, mets, ER+/PR-, HER2+ Surgery 5/8/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/13/2012 3DCRT: Breast, Bone Chemotherapy 11/19/2012 AT Hormonal Therapy 3/11/2013 Arimidex (anastrozole) Hormonal Therapy 10/11/2013 Aromasin (exemestane) Hormonal Therapy 3/13/2014 Faslodex (fulvestrant) Hormonal Therapy 5/5/2014 Arimidex (anastrozole) Targeted Therapy Herceptin (trastuzumab)
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Mar 20, 2019 01:26PM jackboo09 wrote:

Hi hopeful,

Yes I got to NEAD one year on from my dx on HP alone. I only had 4 Taxotere. I believe there is just scarring visible now but I did have a complete response.


Liz x

Stage 2b Her 2 + Est + one pos node Age 40 Dx 3/15/2017, IDC, 2cm, Stage IV, metastasized to other, Grade 3, ER+, HER2+
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Mar 20, 2019 02:14PM pdlc436 wrote:

Yes, I was stable and eventually I got to NED. Any of you on Minocycline?

Dx 1/13/2009, IDC, 2cm, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Dx 10/2017, IDC, Stage IV, metastasized to bone/lungs, Grade 3, ER+, HER2+
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Mar 21, 2019 09:10PM Hopefulgirl wrote:

very encouraging :). Thank u ladies.

I hope you all have a great weekend

Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+ Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Mar 22, 2019 08:14AM BigPeaches wrote:

So my hair is not coming in like it did before, it's very patchy and just kind of weird. I asked my Onc about it and she said she's had one other patient that hair didn't come back :( The only thing she could recommend was this vitamin, over the counter, for hair, skin and nails, has something called Biotin in it. It actually has helped my hair just a little bit so far, but it has also helped with the big D that Perjeta causes, at least I think so. Since I started taking it, I haven't had the big D one time! Could be totally coincidental, maybe my body has adjusted to Perjeta, but thought I would share anyway :)

Dx 6/11/2008, IDC, Right, 2cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2+ Surgery 7/17/2008 Mastectomy: Right Targeted Therapy 8/18/2008 Herceptin (trastuzumab) Chemotherapy 8/18/2008 AT Hormonal Therapy 12/31/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/27/2018, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2+ Radiation Therapy 3/27/2018 External: Bone Targeted Therapy 5/14/2018 Herceptin (trastuzumab) Targeted Therapy 5/15/2018 Perjeta (pertuzumab) Chemotherapy 5/15/2018 Taxotere (docetaxel) Hormonal Therapy 8/28/2018 Arimidex (anastrozole) Hormonal Therapy 8/29/2018 Zoladex (goserelin)
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Mar 24, 2019 12:23AM DGHoff wrote:

Hi Hopeful,

I did 15 weeks of Taxol with H & P starting in January 2016 and Since May of 2016 I've just been on H&P since then. I didn't have complete response with the Taxol, but it knocked everything way down and I've been stable ever since on just the H&P. On the travel insurance question, when I went in for my CT scan while just on H&P, I checked "yes" to the question "are you currently in chemotherapy". When they found out I was just getting H&P they said, "oh that's not what we consider chemo". So, I think you might be fine getting the insurance.

On joint questions and neuropathy, I do have pretty bad numbness in one of my feet. I can live with it, but it is very noticeable when walking, I've had some weird cramping kind of things in my fingers sometimes too. I also get some major muscle cramping too in my legs and feet, but I definitely find it is somewhat related to hydration. The more hydrated I am, the less bad it is.

But, I Just had my scans a few weeks ago and things are still stable. So I'm grateful for these drugs despite the odd side effects.

Dx 6/14/2007, IDC, 6cm+, Stage IIIA, Grade 3, 7/8 nodes, ER+/PR+, HER2+ Dx 12/23/2015, IDC, 3cm, Stage IV, metastasized to bone/liver/lungs, 7/8 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 1/7/2016 Perjeta (pertuzumab) Targeted Therapy 1/7/2016 Herceptin (trastuzumab) Chemotherapy 1/7/2016 Taxol (paclitaxel)
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Apr 10, 2019 10:27PM Hopefulgirl wrote:

hello Djhoff, thank u for your response. I am thrilled to hear you are doing well on h and p alone.

I will have my last taxol this coming Monday April 15th. In all I have had 12 treatments. I am looking forward to being done taxol and carrying on with h and p.

I hope we both catch a break and last a long time without progression.

Cathy

Dx 3/1/2004, IDC, Left, Stage IIIC, metastasized to bone, 5/18 nodes, ER+/PR+ Dx 6/15/2017, IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+
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Apr 12, 2019 09:06AM jackboo09 wrote:

Hi DGHoff,

I am about to have another HP treatment. It is always encouraging for me to see others who are on HP as a first line treatment. I started HP alone after 4 Taxotere in August 2017 and have been on it ever since.

Stage 2b Her 2 + Est + one pos node Age 40 Dx 3/15/2017, IDC, 2cm, Stage IV, metastasized to other, Grade 3, ER+, HER2+
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Apr 15, 2019 04:42PM Elderberry wrote:

pdlc436: you did taxol for quite awhile. Did you have much neuropthy? Neuropathy is one of my biggest worries. I am lined up, for now, for several months.

Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy
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Apr 15, 2019 05:15PM LoriCA wrote:

Elderberry I've done taxol twice - 6 months the first time, only 2 months the second time because it was obviously not working. I have minimal neuropathy, no numbness that makes walking or tasks difficult, just feels like my feet are on fire and it can get really bad at night. It's annoying but not debilitating. I take gabapentin for it. I didn't know to ice the first time but I did ice my feet the second time (I haven't had any problems with my hands). Herceptin was already making it worse and I didn't want to take any chances when I went back on taxol.

It seems to be hit or miss as to who gets it and how bad. I have friends who need to use walkers or canes because of neuropathy. As soon as you notice any signs of it you need to start talking to your MO so it can be monitored. If it gets to a concerning level they will discontinue taxol.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 15, 2019 05:23PM Elderberry wrote:

LoriCA - thanks. Did you get those special socks/gloves? I have gel packs that can go in a freezer. I could buy more so they can be swapped out during the sessions. Hair loss is no biggies --- losing my hands is BIG

Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy

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