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Old 07-11-2009, 11:36 AM   #1
DianneS
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Aromatase Inhibitors/Weakly ER +

Hi all,

I would like to hear from those of you who are taking AI's and are weakly ER+ . I understand this is not common and most folks are strongly ER and PR+.
Nevertheless my onc has me on Arimidex. In Canada we are not given % but only rated ER+1,+2 or +3. I am a +1 and I don't know how that translates into percentages.

Problem is....there is no real clear proof that AI's will help me and I don't want to ruin my bones for nothing. Sure, I can take Fosamex or something but one drug usually leads to taking another one and I would like to avoid that!

Any studies done on weakly ER+ and AI's? Any studies showing relatively long term effects, say 10-15 years after AI's and weakly er+?

Mucho thanks
Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-06-2009, 05:34 PM   #2
robind
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Re: Aromatase Inhibitors/Weakly ER +

Sorry I didn't see your post sooner. I take Femara and I am weakly er+and as pr+. Although it is true that there is a small benefit...there is a benefit. I was taking Boniva before I started and my oncologist recommended that I stop that and take Zometa. I was quite reluctant at first but did a lot of investigating. I have had 1 infusion of Zometa. The course is 2x a year for 3 years. It can be given by IV but I get in my port because I get Herceptin through October. In discussing the overall benefit to me in taking an AI, my oncologist truly felt that a small benefit is just additional insurance. I agree and felt that it was in my best interest to take it - if I should have a recurrance at some point, will I wonder had I not taken that small benefit to me would this have happened???
If you already have osteopenia and or osteoporosis, you might ask your doctors about Zometa or some of the others out there for bone repair and strength. I know of a woman who is stage 4 with bone metastis. She has been on Zometa for at least a year. Recently, she had a scan and received great news...she has absolutely no holes in her bones. That to me was amazing news.
Let me know what you decide to do. Robin D.
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Old 08-16-2009, 03:35 PM   #3
Karen Wheel
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Re: Aromatase Inhibitors/Weakly ER +

I have a strong E- % --- however after I, too, can not find anything strongly motivating enough to make me go on hormone therapy .... and the last few names of drugs my oncologist gave me to research (here in Italy - so I have to do my research in english as I don't read really well in Italian!) but ... both the drug options were for post menapausal women. At that point, I just thought, it can't be this hard! And, I am going to just pass - no thanks. Not going to put my body into more shock --- and the risks are really high for side effects and the benefits (for us Her2 +++) well, the jury seems to be out on that one.
So, not sure if I helped, but I'm opting to not do it.
:-)
Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 08-16-2009, 06:14 PM   #4
robind
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Re: Aromatase Inhibitors/Weakly ER +

Hi Karen.
It truly is a personal decision to make. For me, I decided to err on the professionals where this was concerned. It was said to me that the benfit would be small, but it still would be a benefit. Almost like buying insurance. So, I am on board with taking Femera since Feb.09. I am weakly er/pr but the medical team strongly felt a small benefit is still a benefit.
Stay strong, feel good and do what is in your heart.
Robin D
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Old 08-18-2009, 12:42 PM   #5
DianneS
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Re: Aromatase Inhibitors/Weakly ER +

Hi Karen,

I asked two doctors and they could not give me percentages of how much AI's would benefit me. That is a bit worrisome.

Where is the research to show it works for weakly ER+?

Who has done the research - the drug companies? (Little bias there).

I agree. I finished chemo in March and am still on Herceptin. That is supposed to be the so called magic bullet for HER2 positive but now the medical world wants to add yet another drug that is still in trials?

I'm done being a guinea pig!

Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-18-2009, 02:19 PM   #6
robind
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Re: Aromatase Inhibitors/Weakly ER +

Diannes; as I said previously, it is a personal choice to make. As mentioned, there is a benefit, albiet a small one. I cannot give you a percentage however. I'm not quite sure what you are referring to when you say now the medical world wants to add yet another drug that is still in trials. Arimidex and Femara have been around for a while and not in trials.
I do agree with you, I would also not want to feel like a guinea pig.
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Old 08-18-2009, 03:42 PM   #7
DianneS
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Re: Aromatase Inhibitors/Weakly ER +

Hi Robind,

I am reading from the information for patients that was inside the boxes of Arimidex that I received in June. It says: ' Arimidex...has been approved with conditions. Approval is based on study results from patients taking Arimidex as adjuvant treatment for a median followup of 68 months. In this ongoing study, further followup of patients will be required to verify clinical benefit. Arimidex has been approved for the hormonal treatment of advanced breast cancer in postmenopausal women.'

It goes on to say: 'What is a Notice of Compliance with Conditions'? (NOC/c)? An NOC is a form of market approval granted to a product on the basis of PROMISING evidence of clinical effectiveness following review of the submission by Health Canada." It goes on a bit more so I won't type all of it, but it ends by saying 'Health Canada has provided access to this product on the condition that sponsors carry out additional clinical trials to verify the anticipated benefit within an agreed upon time frame'.

My concern, again, is - I don't want to be a guinea pig. This product is still in the proving grounds stage. Many women have opted to not take AI's and have gone on with no recurrence. It may or may not prove beneficial, but my body has been through quite enough!

Also I was not diagnosed with 'advanced breast cancer' - as mentioned in the first paragraph, so why would I be given this product?
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-18-2009, 04:08 PM   #8
robind
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Re: Aromatase Inhibitors/Weakly ER +

I cannot comment on Arimidex but know many who take it. I take Femera and decided a small benefit is better than none.
Herceptin is a godsend for us all, no question.
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Old 08-25-2009, 12:49 PM   #9
Karen Wheel
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Re: Aromatase Inhibitors/Weakly ER +

I'm still voting no. I'm pre-menapausal and in general after reading, and reading and reading on the internet on all sorts of hormone therapy - I can't find anything that is convincing enough to make me do it. Sorry, my opinion.
My body has been through enough and as I went through yet another Herceptin treatment yesterday - I thought, no.... not going to put my body through anymore. Enough. I'm finishing this next 8 months of Herceptin and then hoping for the best!

:-) Live strong!
Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 08-28-2009, 01:40 PM   #10
DianneS
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Re: Aromatase Inhibitors/Weakly ER +

Hi Karen,

I had assumed I was weakly ER+ and therefore not likely to benefit from hormone therapy. But this Allred score has been making me rethink my decision to not take Tamoxifen/AI's. The ER+ I DO have apparently lit up on the Allred test (thanks for correction on spelling, robind?). My new onc says I would strongly benefit from hormone therapy because of the reaction of these cells, tho fewer in number are moderately to strongly ER+. I don't presume to understand much about all of this. But I do understand the onc saying if only a 4-6% benefit, why not perhaps be one of those 4-6 out of a hundred women who benefit?

Does anyone have info/research on longterm effects of Tamoxifen or AI's? Tamoxifen can benefit the bones, AI's can subtract from bone building.....

In general, those of you on Tamoxifen or AI's, would you say that your general overall energy and health are good, or do you think these drugs cause more muscle/joint pain, etc than they are worth?

A few questions here. Thank you for helping sort it all out.

Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-28-2009, 04:44 PM   #11
robind
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Re: Aromatase Inhibitors/Weakly ER +

Hi Diannes;
My oncologist had said the same is true in my case in having a small benefit. Tamoxifen has been around for over 20 years and there is data out there. I am taking Femera, yes it can diminish bone strength. Because I have osteopenia, my oncologist recommended I take Zometa 2x a year for 3 years as I had been taking Boniva prior (and Fosamax prior to that) and it didn't seem to be doing very much. I know I've read good results with Zometa. That said...my overall energy and health are fine. I do have some joint stiffness but it is very manageable. If I sit for long periods of time I notice I'm a little stiff when I get up. In the morning when I go to walk down the stairs, my knees ache along with my feet for a very brief time. I rarely notice anything during the day. It was suggested to me to take cosamin ds which is for the joints and I've been taking it and think without it I would not feel as good.
My decision to take an AI was also not an easy one knowing that I would not benefit very much. But, I looked at it that if I were to recur, would I regret that small benefit and could it have made a difference.
None of these decisions are easy ones and we all wish we had a crystal ball.
I also have 2 Herceptin's to go. Such mixed emotions about that.
Whatever decision you make, will be the right decision for you. Do not base your decision on the possible effects an AI may have. Not everybody does experience. I didn't notice any joint/muscle discomfort until the 5th month and I cannot stress it enough that it is really very manageable.
Good luck, I wish I were more helpful.
Best to you, Robind
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Old 08-28-2009, 08:47 PM   #12
DianneS
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Re: Aromatase Inhibitors/Weakly ER +

Hi Robind,

I have been researching taking Strontium II for bone building as it is a natural product - a mineral - with no known side effects. The product I have is produced by a company called Advanced Orthormolecular Research (AOR) in Calgary, Alberta, Canada. I asked my onc about it and he said it would be fine; however I may have some kidney issues so I'm waiting to take it after I see the nephrologist Sept. 2. There is a lot of info on the 'net about it in case you (or someone else) is interested. Strontium works with calcium, but not taken at the same time.

I watched PBS some time ago and the speaker said something which stuck in my mind. When dealing with a disease or physical condition try to take natural products first. Only as a last resort did he recommend taking chemical products. Of course, there are some conditions that require chemicals but by & large Mother Nature provides a healthier approach if we take time to search them out.

I was having some muscle/joint pain but found that taking magnesium every day allieviated the discomfort. I'm glad you're doing ok with that issue. It's also a natural tranquilizer so taken before bed will help with sleeping. I find that if I exercise daily I feel much less stiffness....but then, I am 56

For me, I think being done with Herceptin will be one less burden. Every time I go I get amped up and nervous, and it forces me to think about the 'c' word again. I know that some people find not being on any treatment is the scary part - maybe I'll find that is true. But we have to trust that everything we've done, and are doing, is working.

I just had a Herceptin yesterday and was feeling pretty good before that. Now it's back to tummy issues and fatigue, achy joints and a chilly feeling for a day or so. Don't think I will miss it!

Take good care,
Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-29-2009, 05:33 AM   #13
robind
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Re: Aromatase Inhibitors/Weakly ER +

Hello Diannes;
Hmmm, magnesium - how much do you take, how often. Not heard anything about that for joint discomfort.
I'm afraid the Strontium wouldn't be enough for me as I already have osteopenia. The Zometa should have a huge positive impact in repairing my bones, or at least prevent from becoming worse.
I haven't noticed any issues after receiving Herceptin other than runny nose. No fatigue, or chills. Maybe a little stomach discomfort. I also am not having any hot flashes whatsoever...never have...and I was concerned that the Herceptin may not be working. I asked my oncologist and she assured me that not having hot flashes is not an indication that it is not doing its job.
Ah, exercise. I am not at all good about that and must get back into a daily routine. I suspect my joints will feel so much better when I get moving.
Hoping there is nothing serious for you regarding your kidneys.
Take care.
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Old 09-01-2009, 07:27 AM   #14
Karen Wheel
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Re: Aromatase Inhibitors/Weakly ER +

Mag. helps me sleep too ... and I have less joint pain with it --- so yah, I take approx 1000 mg (in a multiple vit and mineral supplement called Catalyst from Mannatech) before I head to bed... it also helps keep the system working good (no constipation which they all warned would happen with chemo and herceptin) and I have had none.

I still have weird dreams --- won't miss that - hoping it goes away after the Herceptin, next year.
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 09-01-2009, 10:06 AM   #15
DianneS
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Re: Aromatase Inhibitors/Weakly ER +

Glad it's helping you Karen!

As I mentioned there are sprays, gels, creams available now with magnesium as the only ingredient. You can get them at any health food store. This is for people who can't take magnesium by mouth as it can cause diarrhea or upset stomach. These sprays/gels absorb into the skin and do the same job. My neck pain is gone from both taking magnesium and rubbing the spray on my neck. Yesterday my husband's back hurt so I sprayed some on and he said the pain was gone within seconds. Amazing.

Maybe this belongs on a different thread but here is a great link that tells you whether the supplements you're taking have in it what it says it does.

It is called Consumer Lab and their website is www.consumerlab.com you have to log in, etc. but the info is terrific.

I almost bought a product until I'd seen that it wasn't approved by Consumer Lab, and why. Interesting

diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 09-01-2009, 10:09 AM   #16
DianneS
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Re: Aromatase Inhibitors/Weakly ER +

Oops, forgot to ask you Karen - how do you balance the pH? I have had some pH strips and went to get some at another place yesterday but they said they aren't really that reliable and moisture and other factors can affect them. What do you use?

Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 09-02-2009, 06:24 AM   #17
robind
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Re: Aromatase Inhibitors/Weakly ER +

I'm going to look into the spray/gel form of magnesium. Thanks for the info. Don't really want to take another vitamin or have any issues with my stomach so the spray/gel/creams is something I will try. Thanks everybody. Best to all.
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Old 11-15-2009, 02:40 AM   #18
Rich66
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Re: Aromatase Inhibitors/Weakly ER +

Consider Tamoxifen. I have been compiling a thread in articles section. It does have increased risk from thrombo-embolic events and endometrial cancer. but..in the scheme of things..all relative. Seems to have benefit in ER+ and ER-. Might make sense if you are on the fence, receptor-wise. If your onc would agree, take some Metformin, Prozac and Vitamin D with it. Ah..but I digress:
http://her2support.org/vbulletin/showthread.php?t=41711

Karen..dropping that coffee cup yet?
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