Serious Stomach Issues

[tdonnelly]

After my last Herceptin treatment while waiting in the hospital lobby I started to feel really nauseated. For several weeks now everything I eat makes me sick to my stomach, bad cramping and loose bowels. I can't even eat a bowl of Cherrios. I have completed the equivelency of 40 Herceptin treatments. I think my body is saying NO MORE...The waves of extreme fatigue are worse than ever. I know we are suppose to complete a year (52 doses) of Herceptin; but feeling as I do am I really doing any harm by eliminating the last remaining doses. What tests can be done to check my digestive system (I also had 4 cycles of Taxol and A/C)
I have gained in excess of 50 lbs since treatment began and I keep having a terrible skin rash at the port site after each infusion; its very itchy . Any suggestions or advice would be appreciated. Thanks. Have a great weekend everyone; all of you are in my thoughts and prayers.
Tamara
Invasive Ductal Carcinoma 10/2006 HER2+
Thyroid Cancer/Hypothyroid 1992

[Andrea Barnett Budin]

Tamara, What tx were you on and what is the time frame? I have often noted that some believe the H is causing their issues, whereas the tx that has been completed has lingering side effects. Often I realize that it is the Taxotere, or whatever, that is no longer being received, that is responsible for what I hear described.

You can read my signature and see where I'm coming from. When I finished T the awful issues it created lasted for a very long time. So it may not be the H that is the culprit.

I developed major IBS as a result of T. It remains w/me but I now have it under control, though watching out for my *trigger* foods is necessary (and a learning process). The terrible weak, fatigued feeling lasted more than 6 mnths. The rash by the port could be coming from something as simple as the kind of adhesive the chemo nurse uses. I ask for a paper kind that helps that problem.

I am sending you loving, healing energy. I hope you will soon get on top of your problems. If I can be of further help, please don't hesitate to ask. You can PM me if you want. Or post.

You've been through a lot I am sure. Please try to stay strong. And I pray you will soon feel relief from your physical ailments, Tamara!
Andi http://cdn-cf.aol.com/se/smi/2b000001e1/06

[Gerri]

Tamara,

I can't comment on your nausea because I was lucky enough to skip all of that. However, I too got a very itchy rash at my port site after each infusion. Don't know if you use it, but it turns out for me the numbing spray was causing the rash. Once I stopped using it (it really didn't make that much difference in the poke-pain anyway) the rash never came back. I completely sympathize with you and the weight gain - I am still battling that.

Hope you get it all figured out soon and can complete your treatment.

All my best,

[Bill]

Tamara, I'm not an expert, but I agree with Duchess Andrea, it's probably not the Herceptin. As she stated, try the paper tape, and like Gerri said, it could be the spray. I know Nikki always got a rash from the regular tape they use. Also, check your premeds, and check with your onc. and chemo. nurses. If you're only getting Herceptin, you don't need any steroid/Decadron. That will put on weight. Do you take any nausea meds? or Immodium? Maybe, if you haven't already, try the BRAT diet. Don't be reluctant to stress how bad these side effects are hitting you to your docs and nurses. Please stay strong and finish that Herceptin. Love and prayers, Bill

[tdonnelly]

Thanks for your insight. Regarding the rash: we switched to paper tape a while back and I dont use spray or numbing creme. Its either the cleaning solution or heparin? I have a mole near the port site that has changed from black/brown to lite pink. The mole itches also. I dont receive pre-meds before Herceptin but am going to ask for a packed of Benedryl. Hopefully it will work.

My weight has remained constant for last 15 yrs prior to bc. My thyroid has been in a comprised state for many years. I dont think it can keep up with all the chemo/treatments. My face and hands and feet swelled since the beginning of treatments. My TSH levels are really balancing as they should. Those of us with thyroid disease and bc its a tough call when it comes to treatment decisions. I really need to listen to my body over the protocol. My stomach is also very bloated. Irritable bowel/big time-to the point of rectal bleeding on and off. I cant have a colonoscopy due to two previous pilonidal surgeries that never healed correctly. I am scheduled for next Herceptin on Wednesday; will have discussion with onc. I need an endocronologist's input. Sorry so long, just wanted to share info for all sisters/brothers with similar thyroid/bc issues. Take Care.
Tamara

[Andrea Barnett Budin]

Tamara, I am in total sympathy re your bathroom drama, including rectal bleeding. And pain!! I developed IBS while on Taxotere. Had a major impact on my life! Big time. I could take 20 Imodium in a day! I reported myself to my onc who asked, after you take all that what happens? I said, I get it under control. He asked, And the next day? I said, I am normal. So he gave me the green light to keep on popping. Then, I learned that 50 mg of Zoloft a day calms my stomach (and me!) enormously! Rarely need Imodium now, and if so, 1 will do!

Also I take Asidophilus Probiotic (friendly bacteia/30 billion viable cells per capsule) 2 X a day every day! LIFE-ALTERING. (Per gastro guy.)

If you have more questions on this terrible topic, ask away. PM me if you want. I have gained control in this area finally and would be happy to share the details with you, Sis...

Take good care of you, Tamara! One issue at a time...
Andi

[tdonnelly]

Hi Andi,
Thank you for your care and concern. I personally do not believe in mind altering drugs such as Zoloft. I was prescribed that particular drug for chronic depression years ago and had a bad experience. A very dedicated group of nurses taught me long ago how to care for myself without the use of prescriptions such as that. I have only a partial thyroid left which contains two nodules that my body fights with everyday, literally. Thyroid disease is a very serious disease which has taught me how to listen to my body. I listen to my dr's advice but over the years we do not always agree. This constant nausea/need to vomit feeling and irritable bowel is my endocrine system screaming from all the cancer treatments. The condition of my body can no longer break down and metabolize this Herceptin. I am not a dr. but just going by my instinct. I have 6 more treatments equaling 18 weeks; I can't keep this up for 18 weeks and continue to work, etc. I understand your protocol saved your life and that is your personal miracle. I have always been the kind of person who takes as little medication as possible and still feel that way. I read all the side effects and dont want to take any more risks and add any more side effects than absolutely necessary. I wish my bc journey allowed me one issue at a time but I have had to deal with numerous issues from every direction. Doing pretty good for an old broad. I have a very strong Faith to see me through this journey.
Tamara

[nitewind]

I had a terrible time with itching after my infusions. My nurse started using betadine (sp)to clean the site and then paper tape. No more problems after that.

[Mary Jo]

Dear Tamara....

Just wanted to say that I ask God to help lead and guide you to a decision that you can be at peace with.

From my lips to God's ears....................

Mary Jo

[R.B.]

Hi tdonnelly,

I have no knowledge as to herceptin and IBS but the following are thoughts from a wider perspective.

I have long asked if Herceptin blocks the fats pathways and conversion to long chain fats, Herceptin does work in the pathways but I do not know how.

Some side effects of herceptin have commonalities with side effects in those with Omega 3 EFA deficiencies, but that may be relevant and may not.

Lack of long chain Omega 3 and excess omega 6 can increase inflammation. IBS is at its core an inflammatory condition. There are a number of trials that suggest fish oil supplementation may assist with IBS. My personal experience with IBS type syndrome is it makes a big difference over time.

Sugar and fructose are also arguable big contributory factors to IBS. This book has interesting thoughts on IBS and sugar.
http://www.amazon.co.uk/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?ie=UTF8&s=books&qid=1205795749&sr=1-1

In essence if IBs is the problem you may like to look at cutting down on Omega 6 high vegetable oils and take 1-2 grams of DHA a day in the form of a quality fish oil and look at Elaine Gottschall's suggestion on drastically cutting sugar and fructose intake.

You must discuss this with your Doctor as DHA/EPA in fish oil can lead to blood thinning, and more so given you sound like you have been through the medical wars so it is important to take professional advice on your symptoms.

If you read this thread it may help inform

http://her2support.org/vbulletin/showthread.php?t=24410&highlight=greek+diet+thread

This is a good book but expensive on the wider relevance to Omega 3 and inflammatory immune type conditions that is understandable at various levels and written for the medical profession etc.

http://www.amazon.co.uk/s/ref=nb_ss_b/203-0122844-6889579?url=search-alias%3Dstripbooks&field-keywords=Omega+3+fatty+acids+in+clinical+nutrition&x=6&y=20

I simply aim to inform debate, it is for you to read up on information provided and discuss it with your medical advisor.

RB

[tdonnelly]

03/19/2008
My onc and I decided to put futher Herceptin on hold. My recent blood test show liver complications and a CatScan has been scheduled. My stomach is bloated like I was 5 mo pregnant. Several other tests are low. An endo dr is being brought in to assist. My thyroid is feeling very full and painful. That rash on my breast that I have talked about for awhile is oozing yellow and the mole looks bad. I have to have another biopsy and new surgical decisions will have to be made. The left breast mamo showed suspicions in 1999/2000; growths in 10/2006 (boil) which were shrinking from last years chemo but presentation on breast is very predominant now. I am seriously considering a double mast. I didnt think it was possible to have two types of breast cancer. I continue to pray for guidance and remain forever strong. Happy Easter to all who celebrate.
Tamara