New member question

[Annehowe77]

Hello ladies, I'm new to this forum and have been enthralled reading all the posts. I haven't met anyone who was HER2+ so it's good to meet you all here.
I finished my Herceptin 4 weeks ago and my side effects are still horrific. My Achilles' tendons feel like they're going to snap, my hands and fingers are swollen (as are my toes) and once I get moving they ease off but lower back pain kicks in.
Can anyone tell me how long this will last as I'm reluctant to start Anastrazole again until I feel better
Anne

[lkc Gumby]

Hi Anne, Congratulations on finishing your Herceptin. A lot of us have lingering effects from Treatment. PLEASE speak to your doc about the pain and swelling. There may be something that can alleviate your discomfort. I wouldn't recommend putting off starting your AI.
Hope your feeling better soon. It will get easier.

[BonnieR]

Glad you found us Anne. As Linda says, side effects can linger but this could be something else going on. It seems that SEs would be dwindling by now. Do you have Lymphedema that might explain the swelling? You really need to bring these symptoms to your doc to get answers and relief. Don't hesitate
It might help us if you completed your signature to include details of your journey
Keep the faith

[Annehowe77]

Thank you both for your replies. I've a telephone consultation with GP today but to be honest I don't have much faith as even the oncologist won't admit it's the Herceptin that's the culprit.
I'm really worried about starting the AI's as my symptoms seemed to trigger when I did take them. I only managed 7 weeks and stopped but SEs continued, in fact, got worse!
I've added my dx to my signature, hope it works!

[sassy]

While each person's experience is different, the continued SE's you describe don't seem typical from Herceptin especially at this point in treatment. I too encourage you to talk with your onc to explore possible causes.

As a nine year survivor of stage three triple positive BC, I am glad that I have taken advantage of all the treatment options available to me. I've certainly had my issues with side effects along the way, but I feel that my treatments have given me the best chance of disease free survival.

I hope you soon find some relief and answers to your continued problems.

Welcome to the group and keep asking questions and seeking advice and support here.

[linn65]

I wonder why you are on Arimidex because you are ER- ??? I don't quite understand why you would need a Estrogen blocker being ER-....

Also, try Glucosomine (sp) it is a vitamin HELPED big time with my feet and hands!! Also, have them check your Vitamin D levels that can make pain worse too in your feet and hands. Finally, acupuncture for the rest of things!! I am now a firm believer of Western Medicine and Chinese Medicine (TCM) in combination they both will help heal you, I think.

I empathize with you!! Hang tough and try until you find what works!!

[Annehowe77]

Yes Linn, I asked that question too and was told it wouldn't do any harm as my first core biopsy showed ER+ and PR- but biopsy of mastectomy showed the opposite.
I'm really confused as to what I should take. I tried Tamoxifen but only lasted a week as joint pain was unbearable.
My Vitamin D levels were low so I'm now taking it in tablet form but no sign of improvement.
I'm suffering terribly with hot flushes and night sweats too so am inclined to think this was the AI setting it off again (I've been post menopausal for 17 years)
Thoughts ladies?

[linn65]

My Vitamin D was at 14 and supposed to be at 30, and I just finished the 12 week dose of 50,000 IU and now on daily dose of 2000 IU. I would add the Glucosomine like my Oncologist told me...Take it 30 days if it helps keep taking it and if it doesn't then stop taking it.

I take 75 MG of Venaflexin for the Hot flashes, and I rarely have them anymore.

I question your ONC putting you on Tamoxifen then switching you to an AI?? I started this BC garbage at 46 and I went from 30% ER to 70%ER after the masectomy. I wrote on here about Tamox vs AI and what my ONC Dr. Kathy Miller (LOVE HER) said regarding which to take.

Keep questioning until you feel settled with a decision that you come up with!

[Annehowe77]

Well that went well - not! GP phoned me and I explained symptoms etc and she's given me a prescription for co-codamol!
I'm no longer seeing the oncologist so I'm back in the care of the GP and it's pot luck who you get to speak to.
I'll take your advice Linn and hope I can get your recommendations here in the UK as I've never heard of them!
My other problem though is that I have heart disease and my LVEF has gone down to 38% (started at 42 due to damage caused by heart attack) so I'm not sure if some of these symptoms are linked.
I'm due to have another echo in June to see if it's improved since stopping Herceptin
Thank you all for caring and taking the time to reply to me

[lkc Gumby]

Hi Anne, just reading this. I am sorry you are having such difficulty and I am sure having docs that are not giving you answers adds to the anxiety.
I am concerned about the swelling given your Heart disease history. I really think you should have a cardiac exam to rule out that as a cause.
Good luck dear!

[BonnieR]

First of all, I don't think a phone conversation is sufficient! It's not like you're complaining of a headache! The physician should be looking at the swelling and giving you an exam
When we get cancer, everything can get blamed as a SE when ,in fact, we are still suspetible to other ailments. Or they can be triggered by our cancer treatment For instance you mention a heart condition. Sometimes that can result in swollen extremities and edema. Is anyone managing that? I would request to have the Echo moved up from June.
I took Glucisamine, but only while receiving chemo. It's an amino acid to help with neuropathy symptoms (numbness)
Why are you no longer seeing oncologist? Who has you on AI?
We have all learned that we have to be our own advocate and the squeaky wheel. Be a pest if you must! This is YOUR life and they need to know you want solutions, not telephone band aids.
I'm sorry you are having to endure this but glad you found us to support you
Keep the faith!

[Annehowe77]

Thanks Bonnie and Linda ��
The oncologist signed me off when Herceptin finished so it's the GP who don't really take a real interest.
My husband has private health care which up till now I've been reluctant to use as it goes against the grain to take the place of an ordinary NHS person but I'm getting desperate so I think I will ask to see a cardiologist privately and hope the insurance pays for it!
Keep in keeping on I guess
Anne xx

[AlaskaAngel]

Anne,

I do understand the reluctance in that medical system to use the private insurance, but in your case given the prior heart attack, low EF, and present swelling, I would see the cardiologist without any hesitation whatsoever. As a frame of reference for you to consider, an EF of 50% is usually the cutoff point for giving Herceptin, although occasionally they will give it if someone is almost done and the EF is in the high 40's. Being seen early can make some difference in terms of the use of various medications to help the heart function better, and avoid possible additional gradual damage. I agree that you need closer monitoring for this.

Best wishes,

AlaskaAngel

[Annehowe77]

Thanks Alaska,
I've been telling my husband about the lack of GP understanding and we're going to demand to see cardiologist when hubby comes back from walking holiday in Scotland next week.
I'll update once I know what's what.
Once again, thank you to everyone for giving me your time and attention
Anne xx

[BonnieR]

Hey, it's good to see my buddy AA here! She has always been wise counsel!
Please don't hesitate to get to cardiologist. We often need to step over the people in our way. Make your own arrangements if you must. Just request your files be sent. Here, we are entitled to access our files and have copies made. Sadly we can't always count on caregivers to do the right thing so we need to be our own advocates
And I still don't understand how your oncologist dropped you if you are still going to be receiving cancer medications.
Keep the faith.

[Annehowe77]

Thanks Bonnie, I have to admit I feel a bit cheated too. At my last appointment with oncologist she just said she was handing me back to the GP and to think about restarting Arimidex or Tamoxifen. I think they have too many patients and too little time to give.
Think I should emigrate as the NHS is run by executives rather than caregivers now.
Anne

[AlaskaAngel]

Hi Anne,

Would the "pot luck" of the system there be flexible enough for to you to possibly have access to the services of a qualified internist, as opposed to a GP, for the more specialized situation in your case because of your prior coexisting heart condition?

I am not near a major medical center, much less a major cancer center, so specialized care is a bit limited for me in some ways as well, but I have had access to an internist here after completing the chemotherapy and radiation, not a GP.

Your situation is a little harder to consider because of the invasion putting you at higher risk, yet with some potential for drugs like tamoxifen or an AI to be protective. The joint discomfort with the drugs is the trade-off, and that leaves the caregivers and you in the soup. (They, however, don't have to bear the discomfort to get whatever benefit may work for you, whereas you do.) I was enough of a maverick to independently discontinue the tamoxifen and refuse the AI successfully, but you are at higher risk for recurrence because of the invasion.

It sounds like the interval before receiving another echo is scheduled may be to try to give your weakened heart some additional time to show signs of any recovery, to allow them to make a more accurate evaluation.

I think a cardiologist evaluation or perhaps an internist evaluation once they have the info from the echo would help by at least allowing you to find out whether cardiac manipulation with common cardiac drugs stands a chance of working in your situation or not, to help you to separate that factor out when making your decision about other difficulties with anti-estrogen therapy. Since the swelling is improved once you get going for the day, but the AI makes it harder to get going, maybe while you wait for the echo and are seeking an appointment with a cardiologist or an internist I wonder if taking the AI every other day would help.

(On a "scientific curiosity basis" ONLY, I wonder if those with a low level of ER/PR get equal benefit from a lesser dose, the same dose, or a higher dose of an AI, but that is pure speculation on my part!) I doubt any research has been done to determine that, though.

A.A.

P.S. Gosh, Bonnie, I appreciate your thoughts on this too. I just wish it was as easy to take the drugs as it is to prescribe them!

[Annehowe77]

What a pleasure to meet people who actually take the time to read other's problems and offer sound advice. I really appreciate it.
Although my MI was 7 years ago, I'm on a cocktail of drugs for the damage. Basically the cardiologist discharged me about 5 years ago as there's nothing else they can do for me.
When having chemo I had to stop my Warfarin (not sure what it's called in Alaska but it's to keep my blood thin). As a result they put me on Fragmin as it wears off more quickly and therefore easier to control. Problem was they had me on too low a dose and I ended up with a blood clot in my left ventricle (this was damaged by the MI)
Due to this I stopped chemo as I figured I'd rather take my chances with the cancer than have my heart kill me first!
The cardiologist who came to see me in hospital said there was nothing he could do and I could go back on Warfarin (he seemed to imply that it was the oncologists fault that this had happened) and anyway, I discharged myself and restarted the Warfarin.
At my next scheduled chemo date I told the oncologist I couldn't take anymore and she said that 4 cycles were almost as good as the six she wanted me to have.
As we don't have anything as sophisticated as Internists here, I'm going to ask GP to refer me to my original cardiologist in the city as these ones in the sticks don't seem very knowledgeable.
The problem is I shouldn't have survived the heart attack as it totally occluded my left artery and this is very unusual. As my LVEF was so low, I had to sign a disclaimer before they would give me Herceptin but having researched my type of cancer I thought the Herceptin would give me a fighting chance.
The AI I only took for 7 weeks and stopped as the side effects were so bad. On reflection it might have been the Herceptin all along so I'll think about restarting as you suggest.
At least on this site I'm meeting people who have experienced the ups and downs and I'm happy to be advised on what to do.
Once again, my heartfelt thanks for taking the time to give me your thoughts
Anne

[Annehowe77]

I've just Googled internists in the NHS and there are none, however, there are internists in private practice In the city so I'm going to get an appointment with them once my husband is home next week! He won't mind paying as he's so unhappy at the way I've been treated.
The one and only time he came to the hospital with me was after a bank holiday weekend.
I was scheduled to have a blood transfusion on the Thursday but by the Tuesday I couldn't stand up I was so weak and dizzy. We went to the oncology unit and the nurse said my observations were fine and I couldn't just walk in and have a blood transfusion!
After I burst into tears and my husband went mad, I got the transfusion. That was the same day they discovered my blood clot.
Honestly, I could write a book on how NOT to treat cancer!
A xx

[Adriana Mangus]

Hi Anne, Welcome to our world, glad you found us. You will find the best information ever on Her2+ and how to deal with symptoms and other issues related to breast cancer and treatments.

I'm taking 2,000 mg of Vit D daily as recommended by my primary physician- my oncologist is too busy with the chemo drugs- along with 1,000 mg of calcium. Do you know that most women diagnosed with breast cancer are low in vitamin D levels to begin with? You being at 14 is better than once I was at 11, currently it went up to 22 but I'm still low.

A lot of women on the site have had Herceptin for at least a year after finished first line of treatment. You might want to talk to you oncologist about dealing with the SE., and see if you can continue on it. There was no Herceptin back when I was DX - read my signature, please, long term bc survivor here!- I WOULD have continued it, for reassurance.

While I WAS TYPING you posted an answer to why you are not on Herceptin. Disregard that part of my response, I understand. Hope you can find a good doctor in your area.