Newly diagnosed stage 4

Mulan1960 said:

As my husband is now getting

As my husband is now getting stronger, do you think it would have been preferable if the chemo had been continued or at least the herceptin?  I'm just concerned that an eight week gap could set him back again.

Hello Mulan,

The doctors may have continued the chemo if they though your husband could have withstood it (his breathing).  Sometimes folks need a break from chemo to regain their strength.  Sometimes doctors dial down the dose if a patient is struggling.  Herceptin is fairly mild.  He might have been able to continue with that.  Perhaps there were cardiac issues the docs were concerned about.  Perhaps they thought the herceptin wouldn't be of benefit without the chemo.  Right now I guess you guys have to focus on rest and regenerating strength.

Glad that you guys are doing well,

Ed

Mulan1960 said:

Good news

After having three bags of blood and an iron infusion my husband was discharged from hospital.  The breathlessness has much improved although it's still there a little.  They've taken more bloods and want to review again early next week.  They feel that if the tumour is still bleeding a little then they're going to give some radiation to stop this.  The scan results have shown no change since May - the oncologist said this is really good news and doesn't want to see him for three months.  I've asked about continuing with herceptin but his view is that as everything is stable and the lymph nodes have shrunk, then to leave any treatment until it's needed.  The main issue for my husband at the moment is excessive mucous again - his specialist nurse is visiting on Wednesday so hopefully she'll review this.  The nursing team want to make sure that his energy levels improve either by more blood or treatment of the bleeding so hopfully the next three months should be more positive.

 Dear Mulan:

It is good that you are talking to some Stage IV EC patients here in America.  Each of us have our own complications depending on our own cancer.  Recently I had an iron infusion and it helped raise my energy level considerably, although constant fatigue is my companion.  So it is at least good news that he is out of the hospital.

Our hearts ache for one another because we know the emotional turmoil it causes for both the patient and the caregiver.  While my own husband had relatively few difficulties with his neoadjuvant treatment prior to his totally successful Ivor Lewis Minimally Invasive Esophagectomy, the same has not been true for me.  Without going into detail of my now ongoing 5-yr. battle with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, I relate both to my days as caregiver to my husband, and also to my own Stage IV patient.  The heartache and uncertainty that follows a diagnosis of cancer can only be understood by others who are also in the same predicament.

Specifically, I just want to address the fact that the doctors are NOT going to continue with Herceptin at this time.   The very benefit of Herceptin is to keep the cancer growth in check, so I’m disappointed and wondering exactly what their reasoning should be.  I am certain “ED” (DeathorGlory) won’t like it when he reads this because he attributes his survival so far with the “continued” application of HERCEPTIN. 

Now as one who keeps a good many medical reports in my WORD file for research purposes, I find the one that I’ve listed below as a possible reason for the British doctor’s choice to not use Herceptin right now.  It is no longer in print but very revealing.  I don’t want to add “insult to injury” but “National Health Care” seems to play into British doctors decisions as to when certain meds should be used.  Perhaps their hands are “tied”, but I’m glad that at least for the present, we do not have our health care determined partly by cost effectiveness and the ultimate prognosis of the patient being treated.  Am I to be discarded because I am 79 and be denied treatment in order to save money for a younger crowd?  Do I have nothing left to contribute to society that is worth the medical expenditures?  Am I ready to be discarded as “out of date and no longer useful?”  Seems as long as I am paying the insurance premiums and feel that the medical treatment I am receiving is resulting in “quality of life”, medical options should be available to me, and I should make the final decision about when “enough is enough.”  And there are days when I get plain “tired of being tired”, but at this point quality of life has been such that I am willing to withstand the harsh side effects in the hope that I will be able to enjoy my family and friends here.  

My family and I have had the all-important discussions about my end-of-life care. I have discussed it with my oncologist as well, and we are all on the same page.  I do not wish to be kept alive by artificial means when it is determined that treatments are no longer beneficial.  That relieves everyone of having to make the decision that no one wants to make.  No one in my family should feel pressured to continue treatments when there is no hope of recovery.  But here in America, there certainly is a contentious debate over “when enough is enough.”  I say all that to say this.  It seems that the British “experts” have expressed their opinion on who will receive Herceptin and for how long!  That is borne out by the article I have referenced below.  It is no longer in print, but I had saved it from the time I first read it.  And here is part of a similar discussion here in the states. 

*https://www.youtube.com/watch?v=g_0o_O1Bbwo

Bottom line for me would be to insist that Herceptin be continued since it has been shown to be so effective with Stage IV HER2positive patients both in Breast & Esophageal Cancer diagnoses.

Thank you for keeping us informed.  It’s always good to talk with other cancer patients who have similar diagnoses.  We also know it “hurts” to even sit down and write us.  Sometimes the teardrops can keep us from seeing the keyboard.  May God continue to bless you with the strength and stamina it takes to carry on.  And may those British physicians not spare any expense to give your husband the very best treatment. 

Love & prayers,

Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) currently undergoing treatments.  And also the wife of William Marshall, EC Stage III (T3N1M0) Survivor since May 17, 2003.

_________________________________________________ 

[Mulan - My note:  Perhaps this article written back in 2010 and no longer available after November 11, 2010 might shed some light on why the British doctors do not see the value of Herceptin at this time.  Because of what I have highlighted in bold and underlined, is one reason I am NOT in favor of nationalized health care here in America.]

“Drug Appears to Prolong Survival in Stomach Cancer Patients

But experts question whether high cost of treatment can be justified

 URL of this page:

 1.      http://www.nlm.nih.gov/medlineplus/news/fullstory_102390.html

(*this news item will not be available after 11/18/2010)

By Robert Preidt - Friday, August 20, 2010

 THURSDAY, Aug. 19 (HealthDay News) -- Use of the drug trastuzumab in addition to chemotherapy can extend stomach cancer patients' survival by nearly three months, a new study has found.

However, an editorial accompanying the study questions whether the treatment is cost-effective. The study and comment were both published in the Aug. 19 online edition of The Lancet.

The ToGA study, which included 584 patients at 122 centers in 24 countries with HER2-positive advanced gastric cancer, found that the addition of trastuzumab to standard cisplatin/fluoropyrimidine chemotherapy resulted in a median survival of 13.8 months, compared with 11.1 months for patients who received chemotherapy alone -- a 26 percent difference.

The findings of the phase 3 clinical trial suggest that using trastuzumab with chemotherapy should be considered a new standard option for patients with this type of stomach cancer, said Yung-Jue Bang, of Seoul National University College of Medicine in South Korea, and colleagues.

But an accompanying editorial by two U.K. experts questions the cost-effectiveness of the treatment.

"Patients in the ToGA study were treated with trastuzumab every three weeks until disease progression. The median time to progression was 6.7 months," wrote Alastair J. Munro and Dr. Paddy G. Niblock, of the department of surgery and molecular oncology at Ninewells Hospital and Medical School, University of Dundee.

"When we use the cost estimates of trastuzumab therapy calculated by the U.K.'s National Institute for Health and Clinical Excellence (NICE), this equals an average cost of [13,857 British pounds, or US $21,640] per patient.

Cost per life-year gained will therefore be around [55,000 British pounds, or US $85,893]," Munro and Niblock continued.

"In the 24 countries that contributed to the study, yearly health expenditure per citizen varies from $40 to $5,500 (2007 U.S. dollars), which reiterates the important moral question -- what is the justification for introducing a treatment that might enable one individual to live a few months longer but, which will consume for each person treated, the total yearly health expenditure for scores of their fellow citizens?" the editorialists wrote.

SOURCE: The Lancet, news release, Aug. 19, 2010 HealthDay…”

______________________________________________________ 

2.     https://www.nhs.uk/conditions/herceptin/

 3.     https://www.nhs.uk/conditions/oesophageal-cancer/

 4.     https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/trastuzumab

“Trastuzumab (Herceptin)

Trastuzumab is a targeted cancer drug and is also known by its brand name, Herceptin.

It is a treatment for cancers that have large amounts of a protein called human epidermal growth factor receptor 2 (HER2), such as:

• early breast cancer
• advanced breast cancer
• advanced stomach cancer

Some breast and stomach cancers have large amounts of human epidermal growth factor receptor 2 (HER2). They are called HER2 positive cancers. HER2 makes the cancer cells grow and divide.

Trastuzumab is a type of targeted cancer drug called a monoclonal antibody. It works by attaching to HER2 so it stops the cancer cells from growing and dividing…”

_____________________________________________________ 

[My note: Herceptin was approved for Esophageal Cancer patients back in 2010 both here and in the U.K.  As we know at first it was thought that only Breast Cancer patients were presenting with the over-expressive oncogene that caused the cancer to multiply more rapidly.  Then it was also discovered that Esophageal Cancer patients were presenting with the same over-active gene and thankfully, the FDA approved it for EC patients in the states. It was also approved in the UK back in 2010.]

5.     https://www.roche.com/investors/updates/inv-update-2010-01-28.htm 

6.     https://www.roche.com/investors/updates/inv-update-2010-10-21.htm

_____________________________________________ 

Roche

7.     https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-018-0989-8

Generation of HER2-specific antibody immunity during trastuzumab adjuvant therapy associates with reduced relapse in resected HER2 breast cancer

__________________________________________________ 

[My note: A marked improvement with Herceptin]

Resected HER2 breast cancer patients treated with adjuvant trastuzumab and chemotherapy have superior survival compared to patients treated with chemotherapy alone. We previously showed that trastuzumab and chemotherapy induce HER2-specific antibodies which correlate with improved survival in HER2 metastatic breast cancer patients. It remains unclear whether the generation of immunity required trastuzumab and whether endogenous antibody immunity is associated with improved disease-free survival in the adjuvant setting. In this study, we addressed this question by analyzing serum anti-HER2 antibodies from a subset of patients enrolled in the NCCTG trial N9831, which includes an arm (Arm A) in which trastuzumab was not used. Arms B and C received trastuzumab sequentially or concurrently to chemotherapy, respectively…

Results

Prior to therapy, across all three arms, N9831 patients had similar mean anti-HER2 IgG levels.

Following treatment, the mean levels of antibodies increased in the trastuzumab arms but not the chemotherapy-only arm.

 The proportion of patients who demonstrated antibodies increased by 4% in Arm A and by 43% in the Arms B and C combined (p = 0.003). Cox modeling demonstrated that larger increases in antibodies were associated with improved disease-free survival in all patients (HR = 0.23; p = 0.04).

Conclusions

These results show that the increased endogenous antibody immunity observed in adjuvant patients treated with combination trastuzumab and chemotherapy is clinically significant, in view of its correlation with improved disease-free survival. The findings may have important implications for predicting treatment outcomes in patients treated with trastuzumab in the adjuvant setting…”

_____________________End of references___________________ 

Hello Mulan,

Sounds like you guys are doing as well as possible.  Good for you.  Excellent that the breathing has improved.  I know first hand that that is a big thing.  I don't know about the bleeding, though.  My ignorance means nothing though, just that I don't know.  I hope the radiation is able to remedy that. 

Herceptin is something that can be given even in the absence of actual cancer.  I've been receiving it weekly since 2011 as a preventative measure.  I was stage IV with a 7-8 month life expectancy.  I'm still here to say that herceptin can be effective against even stage IV.  I do know that heart issues are a thing with herceptin, though.  I get an echocardiogram every three months to make sure my heart can still withstand it.  I just hope your docs aren't bailing for lesser reasons.

Best Wishes,

Ed

Mulan1960 said:

Hi Ed

Thanks for replying Ed.  I've got a meeting with one of the team on Wednesday so the question of herceptin is top of my list.  If I don't get a satisfactory answer then I'll get a second opinion.  We're at one of the leading cancer centres in the UK which is just outside Liverpool and there's another one, the Christie about 20 miles away from us so easy to travel.  Thanks to this board I know the questions to ask.

Hi Mulan,

I drive near 20 miles to my cancer center.  There is quite literally a red light every block for 18 miles.  I drive directly past the front doors of Abington, Einstein, Temple, and Hahneman.  I drive within one block of CCTA, and within a few minutes of Fox Chase Cancer Center.  I go to the place that works for me.  I do that every week, plus more.  I do what I think is best for me (and I'm still alive from stage III and stage IV EC).  You just keep on doing what's right for you guys.

Keep on keepin' on,

Ed

Dear Mulan1960,

I am so very saddened to hear that your husband has left us. It seemed just a short time ago that we were hoping the antibiotics had done their job and he had turned the corner in his struggle with the side effects of his cancer.

I am glad that he had a chance to return home and passed peacefully surrounded by people who loved him.

With my deepest condolences, sending prayers for peace and comfort for you and your family.

Regards,

Paul